|We are requesting prayers from any and everyone!|
So yesterday, we finally made the long trip to the University of Chicago and met with Dr. Sonali Smith for a second opinion. Dr. Smith is one of the leading experts on lymphoma in the world and the timing in meeting her was providential and perfect because she was able to make a more complete and accurate diagnosis with the benefit of having the full blood work and PET scan available for her review and we were able to miraculously get in to see her before Kim's 2nd round of chemo.
She is an acclaimed research doctor with excellent bedside manners and despite her brilliance has a way of explaining things in “layman” terms. She was also very up-front about all the potential risks and pitfalls we might be facing. While, to be truthful, some of it was hard to hear – we appreciated her honest approach and her over-arching desire not to just “treat” the disease and beat it into remission, but to cure it, so that it might never appear again in Kim’s lifetime. (It’s not until 5 years after treatment in which the cancer does not reappear that she is officially declared to be “cured” – so this is a long road regardless of remission)
Apparently, there are over 60 types of lymphoma and although R-CHOP is the standard protocol for treatment for the vast majority of this type of cancer, certain kinds of lymphoma, with certain patient risk factors, can dictate a better course of treatment.
She is still in the process of reviewing the blood slides and looking to see if it is MYC positive (?) but her hunch is that Kim may have a primary mediastinal b-cell lymphoma (slightly different from diffuse) and she is strongly recommending (even if it is just diffuse b-cell lymphoma) that we take on a more aggressive approach to the cancer with a regimen called EPOCH-R based on several risk factors such as the size and stage of the tumor in Kim (see this link for basics on this treatment). This treatment is similar to the R-CHOP (notice it’s basically R-CHOP spelled backwards with an added “E”) but it adds one additional drug “Etoposide” – which should further enhance the cure rate. Dr. Smith only recommended that Kim go through 6 cycles instead of entertaining going to 8. Apparently, for some of the drugs in this regimen there is a maximum limit that the human body can take over a lifetime – too much and it can literally kill you - it's that toxic. So it’s very important that this is dealt with in the first go-around as future options for treatment will be more limited.
She also told us she would highly recommend methotrexate injections which would be administered via spinal taps (similar to epidural injections) during every cycle. Apparently, there is a risk that the cancer could reappear and attack the brain and this drug, while not eradicating that risk altogether, would mitigate that risk to a low percentage of recurrence. This risk was never communicated to us and the thought of brain cancer was a bit much for Kim and this is where she started to fight back tears.
The downside to all of this is that this more aggressive approach will definitely be harder on Kim’s body and it will also mean that the treatment cannot be done on an outpatient basis but will require coming into the hospital for every 3 week cycle for 4-5 days at a time as the drugs need to be administered slowly. We have decided that moving Kim’s care to Dr. Smith is what the Lord is leading us to do. As I explained in previous posts we sensed the Lord’s leading us to her to be our doc (see here and here). It looks like the second round of chemo will likely begin on Friday and we will be admitted to the U of C hospital system then for a few days. This will obviously mean we are in for some long drives into the city but it is worth it to be under the sensitive care of one of the best. The good news is, in Dr. Smith’s mind, with this treatment the cure rate should approach nearly 90%.
OUR TRUST AND HOPE
That said, whether the predicted cure rate is 90% of 10% is somewhat irrelevant. As is the case with all forms of cancer, there is no such thing as a “sure thing” and while we are being prudent in doing everything we can to find the best care and treatment for Kim, our faith does not ultimately lie in a specific treatment, or a specific doctor but only under the hand of a sovereign God who knows the end from the beginning – and this has been our greatest source of comfort.
Some trust in chariots and some in horses, but we trust in the name of the LORD our God. –Psalm 20:7
RISK OF INFECTIONS
Dr. Smith recommended that we take a very conservative approach to the risk of infections. So, while we had planned to see a lot of people during this time, we are now having to impose a strict limit to the number of visitors into our home – especially children and especially if there is a hint of any illness. Anyone that enters our home must wash their hands thoroughly and immediately. Kim will be wearing a mask if we decide to go out into public places (i.e. church) and will be staying away from tight, crowded places. We were told not to travel until 1 or 2 months after the last cycle which would mean no travel until June or July. While we appreciate all the recent visitors I’m really asking all our friends to respect this change. If you are kind enough to drop off food for us please use the utmost care when preparing the food – and please utilize the bin by the front door. Also, while we know some of you incredible friends of ours come a long way to serve us in this way, and while we would LOVE to see you, it’s difficult for us to greet everyone that has been kind enough to do this so please understand this as well.
Now for some specific prayer requests:
-Please pray for our children. Caleb has been having nightmares about mommy dying and Selah gets nervous every time we go out and asks if mom is going back to the hospital as she’s fearful mommy will be gone for a long time again. Timothy is still happy as a clam playing Legos and monopoly. They will all need to adjust to this new schedule along with the increased hospital stays but I must say overall they are doing remarkably well and we attribute it to the Lord hearing many of your prayers for them.
-Please pray that this treatment would be successful. We won’t know for sure until +5 years from now but pray that Kim’s body would respond well to the drugs (i.e. no more infusion reactions please!) and that despite the many toxins these drugs will introduce into her body, that the side effects (e.g. nausea, fatigue, cramping, soreness, etc) would be muted and the tumor would disappear quickly (especially as it relates to her percardial effusion/heart issues).
-Please pray that we would continue to see “more of Jesus” in and through all of this. We are literally walking “through the valley of the shadow of death” right now, but pray that, not even for a moment, would we would succumb to “fear” but continue to find the ethereal peace that comes only from sensing His nearness.
Even though I walk through the valley of the shadow of death, I will fear no evil, for you are with me. –Psalm 23:4a
We are praying for healing. A full and complete healing as are all of you. But more than a physical healing we pray that God would redeem this “curse” as only He can, and from it a myriad of spiritual blessings will flow not just upon us but to each and every person (known and unknown) who has chosen to walk this valley with us. Glory to God – we are seeing Him already work in a profound and powerful way and we stand amazed.
Humbled by Grace,
Peter & Kim
p.s. Sorry I didn’t pick up on the Special Praise – a lot to pray for right now and that will come soon. Thanks!