Well, since I just deleted everything I spent the last hour writing, let’s try it again only this time I’ll save it before I try and do something else!!! Ugh!!!
Yesterday we had our appointment with the radiation oncology team and while it did not go exactly as planned, it was informative. They had hoped not to have to sedate Kennedy, as her treatments will be only a few minutes each day…until they met her! After 21 days of steroids she was showing her worst side and was even screaming and fighting just because she needed to stand on the scale to be weighed. Because the second part of her appointment now has to be done in part with the anesthesiologist, we will be doing that on Friday. We spent 2 hours yesterday just going over Kennedy’s medical history since diagnosis (that is a novel in and of itself!) and discussing what would happen on the days she has radiation, possible short and long term side effects, and consenting to her treatment. On Friday, they will create a “mask� to hold her head in the exact same position for each radiation; she will have a CAT scan, x-rays, and full work up to prepare for her starting date of Tuesday, April 4th. It will be a few hours I imagine.
Most of what we learned yesterday only confirmed our worst fears and gave us new ones to worry about. The “good news� (if you can call it that) is that by radiation oncology standards, she will be receiving a relatively low dose that will probably cause minimal immediate problems for her. The prediction is that she will have a “sunburn� on her head as the worst problem. The long term side effects worry them much more because as I mentioned in my previous post, they are radiating Kennedy’s entire brain. Some of the side effects that Kennedy could have as a result of her treatment include: short term memory loss and problems with memorization concerning things like math facts, a whole host of learning disabilities and processing complications, IQ point drops of up to 30 points, cataracts that require retina transplants, damage to the pituitary gland that could cause growth and hormone problems, damage to the posterior or back of the eye and socket, vision problems, stunting of the growth of her skull possibly requiring surgery to correct, brain tumors as an adult (about 10-15% of kids with cranial radiation experience these 15-20 years later), hearing loss and some I just can’t pull out of my brain right now. You can imagine that this wasn’t the best news of the day. Some factors that put her at greater risk for these complications are: her age (her brain and skull are still experiencing rapid growth and this could have a profound affect on how this occurs as opposed to a child in their teens), the fact that she has already and will receive a greater than average amount of intrathecal chemotherapy that is also known to cause some of these complications, the fact that she is a girl (I know that is weird but for some reason they have been known to be at greater risk for some of these effects) and because they are largely targeting healthy cells. Many healthy cells tend to recover while leukemia cells are more fragile and will just die, but there is no guarantee as to how many or which cells will and can recover. It really is a wait and see kind of game. He said that he has seen many kids go on with few complications and others that always struggle after treatment. We are praying for healing for Kennedy with minimum side effects. I guess we should be thankful. With her initial white count at diagnosis, we were very fortunate she did not have CNS involvement as that requires higher doses of radiation to the brain and spinal column which has its own host of serious complications. What is hard to wrap my brain around is that we are mostly targeting healthy cells and going after leukemia cells we can’t find and don’t even know exist.
So why is it so important to do the radiation?? That is the question we have been asking ourselves for the last 10 months since we found out it would be necessary as part of her protocol. We even considered removing her from this study (AALL0232) and placing her on a protocol called Total XV from St. Jude’s which is similar but does not require radiation as part of treatment. By performing studies, they found that kids with high risk and/or slow response diagnosis were relapsing in their brains, spinal fluid and behind their eyes at alarming rates despite receiving chemotherapy. They added intrathecal chemotherapy in hopes that the circulating fluid would penetrate into these regions and wipe out leukemia cells. While this was true in many cases, there were still groups of kids who continued to relapse. At first they gave higher doses to all high risk CNS relapse kids with serious side effects and decided there had to be a better way to target only kids who needed it and find effective doses at lower rates. They began testing for what is called minimal residual disease (MRD) and found that kids with small amounts at Day 29 of induction therapy were more likely to relapse regardless of when they went in to “clinical remission.� Kennedy was one of those kids with trace amounts of MRD at Day 29. This not only warranted a longer, more intensive chemotherapy schedule but radiation to eradicate even trace amounts of leukemia cells that could be hiding out in the brain and behind the eye socket. For Kennedy especially, a relapse would be devastating. I do not in anyway want to minimize any cancer relapse and say that it would not be devastating for any family but her oncologists have made it clear that because of her recent round of VOD and the fact that her liver is still not functioning (and may never) normally she would not likely survive the necessary chemotherapy needed to obtain remission and prepare for a transplant. They have also confirmed that a bone marrow/cord blood transplant would likely cause VOD again in Kennedy and it would be fatal. At this point, her cure rate is 60-75% at best; a 1st relapse would give her approximately 30% and a 2nd relapse near 10% if she survived. We are unwilling to take any chances and know that her best chance for a cure is for it to happen the very 1st time. The most important thing is to give Kennedy the best possibility at living a long and healthy life. Yes, we are taking a chance with the intensive treatment and radiation but if we had chosen not to go through with it and she relapsed, we would always live with the regret that had we gone with the big guns that were offered we could have prevented it. It is true that her treatment almost killed her in December, but without treatment she would relapse within weeks and would no longer be with us.
So, are we happy about this? Not happy. Do we feel that we are making the best decision we can for Kennedy with all of the information available? Yes. Someone asked me early on how I can deal with pouring poison in to Kennedy’s body and I said it was because I will NOT give up on Kennedy. Sadly, it is a necessary evil for her to have a chance. I have tried in my journal to focus on those things that are positive in our journey with Kennedy but it is crucial to your understanding of what we are going through to know that with every medication we are faced with the possibility of terrible short and long term side effects. Not all but some are: permanent heart damage including the literal destruction of parts of the heart muscle, infertility, learning disabilities, a weak immune system, liver and kidney damage, permanent neuropathy, the development of other cancers as a result of treatment, muscle weakness, vision loss, etc. Not to mention that most children do not die from their cancer but from infections and complications caused by treatment. This is our reality but to do nothing is certain death for her. The cure rate in the 1960s was less than 5%-families were basically told to take their children home to die and they had very little time…less than a month. We have come a long way in our fight against leukemia but not without a price.
Okay, that is probably enough information for any one journal entry. Kennedy has physical therapy tomorrow and we meet again with the radiation oncology team on Friday. Tuesday she is scheduled to being radiation, have an LP with intrathecal Methotrexate, Cyclophosphamide and begin 4 days of Ara-C. She had her counts check yesterday and they believe that her counts may dip slightly but should be recovered by Tuesday to begin the next leg of treatment before maintenance. Maintenance…oh the sound of that word warms my heart! No, it is not the end of treatment but a much easier phase compared to what we have been enduring. It will continue until August of 2007 but will give us a least a chance to take a breath.
Hug your babies and pray for courage for our Kennedy.
If I had my child to raise all over again,
I’d build self-esteem first, and the house later.
I’d finger-paint more, and point the finger less.
I would do less correcting and more connecting.
I’d take my eyes off my watch, and watch with my eyes.
I’d take more hikes and fly more kites.
I’d stop playing serious, and seriously play.
I would run through more fields and gaze at more stars.
I’d do more hugging and less tugging.
~Diane Loomans, from “If I Had My Child To Raise Over Again”
Making the decision to have a child is momentous. It is to decide forever to have your heart go walking around outside your body. ~Elizabeth Stone
Hope-Faith-Courage,
Mel
