My son Brent was diagnosed with Osteosarcoma on his right pelvis nearly two years ago, and after 15 weeks of chemo, he had his entire right pelvis removed in NYC. It was a giant surgery (18 hours) to remove a giant tumor. We were very fortunate to have found this surgeon, because he was able to reconstruct Brent's hip using donor bone, and save his leg. (We are so grateful for the donor family as well) There were 2 follow up surgeries back then, during the nearly two months that we were in New York, before we returned home to Ohio to finish another 15 weeks of punishing chemo. The delays involved in the second half of chemo carried this process to nearly a year.
But, at the end of this year, my son was on the road to recovery. He began physical therapy. His marrow recovered. He returned to school. None of this was easy, but we were all happy to have active battle behind us. There were still an ungodly number of visits to the hospital for scans, labs, PT, specialists... and at Christmas, a wound on his hip that simply would not heal sent us packing for New York again...a surgery whereby a muscle was moved from his abdomen over the donor bone, to help provide a better blood supply to the allograft and promote healing.
And he healed. It seemed to be a success, until last week's routine x-ray showed that the bone is disintegrating. Infection or cancer was the question of the day...because the cause of this deterioration dictated our choices. If it were caused by cancer's return, there would be no choice. We would have to amputate and he would be on a very hard road of amped up chemo.
If it were infection, there might be some choice. I prayed hard for infection, because my blood ran cold at the thought of cancer, both due to the orthopedic requirements as well as everything else that this implies. Actually, amputation would be the least of our worries. I am very glad to be able to put those thoughts aside for some time. May they remain there for all time.
We always knew that the donor bone would eventually need to be replaced. 'Eventually' is a very theoretical time, until you are looking at it face to face. I am grateful that I am not smelling cancer's foul breath in this version of 'eventually.'
I would never have scheduled this, setting time aside for it. But here we are. And it will be ok.
Eventually, we will need to replace our roof...it is expensive and a very unsexy way to invest in your house, as I say. If you drop that kind of cash in your kitchen for example, you would have a party and invite your friends over to take a gander at your new cabinets when it was done. There would be wine, and it would be worth the aggravation. Which is why people ever embark upon such a construction project to begin with...one so inconvenient and disruptive, but with a big payout.
Most people, if they think about their roof at all, look at it and say "Eventually we will need to replace that." But if it isn't leaking, or worrisome in some other way, you wait another year. We have been in our home for 8 years...not sure how old the roof was when we bought it. I am grateful that we do not need to replace it this year. I hope to be grateful next year as well. I hope to sell this house with the gratitude of many, many years of never replacing our roof. If the eventuality of replacing the roof never came to me, I would be quite satisfied.
But, should we discover a leak, we knew that this was a possibility...a probability, in fact. So, we call our contractor, and get busy. Repair, or replace?
I hope that the weather is dry, because we are doing a full tear off, exposing the rafters on this one. There are plans to rebuild though. We are thankful for the rebuild. So very thankful.
Brent is happy, because he can finish the school year and enjoy all of the activities associated with the Kick-It fundraiser for pediatric cancer research that his school does every May. He has been to a bake sale, a car wash, teacher dunk tank, a soccer scrimmage (boys vs. girls--girls won!) and next week has more events set up by middle school children. If they make their goal again, they will have raised a total of $100,000 in four years, only working in the month of May.
While there is some adult help, this is achieved mostly the effort and organization of children. One of Brent's friends set up a website (heck, I couldn't do that) and a calendar of events. There were scads of kids washing cars and baking cupcakes. They are using their time and talent to make a difference. They are using their collective numbers, with every little bit advancing the common goal. It is a powerful lesson for these children, and one that I was impressed by, even before we were so personally invested in the cause.
I am grateful that Brent can participate in these things. The timing of this surgery allows him to finish school, which is so important to him, and to attend 'Kick Bald' on Monday. He challenged Lauren to raise $250 for the privilege of shaving his head in honor of kids in treatment, which has been a source of much teasing and fun between the siblings. (I do not need to tell you how differently I felt about this as we worried about Brent's pathology last week, thinking he might soon be a child in treatment)
Lauren baked up a storm, and made her goal...and then some. I am so proud of her for thinking and planning. She is grateful for the generosity of the donors...because while she makes a mean brownie, she recognizes that the charity was what was being supported. It will be a fun event, watching Lauren shave Brent's head at the school. There is a sense of solidarity in the baldness. Last year, when Brent had no hair, it was touching to see so many of his classmates sporting a shiny dome in his honor. We are glad to be honoring other children this year, showing support in a visible way.
We are looking forward to a time when baldness and cancer are not associated with children...or anyone for that matter.
Brent will be doing his Make a Wish next weekend. This is a wonderful organization that provides wishes for children with life threatening conditions. Brent has dreamed for nearly a year and a half about what he would wish for, which has been a wonderful distraction from the many challenges that he has faced. Many of his wish ideas involved sand or water, or a combination of both, which does not mix well with an open wound. He wanted to wait until he healed, so that he could do this sort of wish. He waited, patiently most times. Eventually, we thought, he would heal and be able to do it.
But 'eventually' became far too theoretical for him last week. He faces weeks in the hospital this summer and he knows that this surgery is not a sure thing. He wanted to move forward with another wish. He is going on a "shopping spree, " which mostly involves getting a computer. He would like to learn how to design apps (?!?) and feels that a laptop would be a good distraction while he is in the hospital. He knows what this is like being isolated that way, and is using his wish, again, to make that difficult time better.
As I have been planning for this trip, I am struck with how different this is from the last time we removed his hip:
- There is no cancer to worry about, or chemo beckoning. I will not be frantic about delays. There will likely be delays. I will be calm.
- Brent will be emotionally replenished and prepared.
- We know going in that it will be at least 4-5 weeks. We can plan a visit with the kids in the middle of this because there are not restrictions for cold and flu.
- The kids are out of school, so keeping things rolling here is simpler. Alex is 15, and because he is home for the summer, can help with his sisters.
- There are things that have fallen into place for us, like the fact that the chief of surgery from Bologna Italy, was recently picked up by MSKCC and put on staff...he has successfully done the surgery that Brent requires 12 times. I am comforted by this addition.
- Dr. Healey, because he saw us just before his trip, has been consulting with the brightest in Europe about Brent's case. We benefit from their experience and opinions, without needing a passport.
- In case I failed to emphasize it enough, we have no oncology pressure cooker. I cannot say what a difference this will make going in.
This series of surgeries is by no means a slam dunk. It will be a long process and fraught with risk. But there are things that I am encouraged by. Things that I am comforted by. Many things that make the challenge more manageable. The timing of this eventually, is part of that comfort.