“I told you these things so that you can have peace in me. In this world you will have trouble, but be brave! I have defeated the world.” ~John 16:33 NCV
I apologize that I haven’t posted an update in awhile. I have to admit, this is hard. Really hard.
The last week or so, I’ve been meaning to write to you, but in all honesty I was just too depressed to do it. God gave me the strength to get out of bed each day. He gave me enough strength to be the best parent I can be, and each child had special extra mom needs this week. He gave me the strength to get a little bit of business done (including persevering through hours upon hours of phone call to EDD to FINALLY get receive my Paid Family Leave pay). He gave me the strength to get to the gym and do a little something for me (even if I really wasn’t in to it). He gave me the strength to take care of Kevin, even when I received many dirty looks and grouchy attitudes because of all the things Kevin is not enjoying about this journey. But not enough strength to muster a post. Or make a some phone calls that need to be done.
This week is better. A little bit.
Kevin is feeling much better. Towards the end of the last week in May, he was still suffering pretty much from the side effects of chemo. He ended up needing some IV medication and fluids. Additionally, a few medications were added to help with these symptoms and Kevin started feeling better pretty soon after that. He is slowly gaining strength. We are grateful.
Kevin still is feeling the effects of the cancer in his lungs and the pulmonary em bolus and therefore gets winded pretty quickly and easily. He also tends to get lightheaded frequently when he stands up. All things that are to be expected. Our new goals are to get him out walking a bit more and adding in some more simple exercises to attempt to build up his strength while he is in this recovery period awaiting the next step.
News of the week:
Kevin’s tumor markers continue to show that he is responding to the treatment. His HCG level is currently 100.6 (this was at it’s peak 625,000. the goal is less than 2.5) It is making it’s way down. We will be watching this weekly. If it continues to decline and gets to ‘normal range’ or gets close to normal range and then stays stable he will be eligible for RPLND surgery.
This is a pretty intense surgery in most cases, but even more complicated based on Kevin’s particular situation. We met with a surgeon at Kaiser’s Sunset facility in LA and he feels confident that he is capable of doing the surgery. He handles the majority of Kaiser’s Southern California complicated cases and indicates that he has done similar cases before. As mentioned before, Dr. Nichols from Seattle suggested that the best case scenario for Kevin would be treatment at a high volume testicular cancer center. We have discussed this at length with with our oncologist but she has not been able to put in a referral. The surgeon felt like a referral was unwarranted so he did not do it either. I finally called member services today and and was told that the general primary physician is the one to write this request. So today I asked for that. We shall see what happens there. Also a grievance has been submitted and it it is marked as urgent for resolution so hopefully we will have some answers soon.
The details of the surgery are a little scary but this is the way to remove the mass in his retropertineal cavity and the lymph nodes and hopefully to extricate as much of the remaining tumor mass as possible.
If Kaiser does not authorize outside treatment, Dr. Nichols will continue to consult on Kevin’s case. All tests and images will be forwarded to him and he will give us a plan, and then our Kaiser doctors will implement the plan. We still feel as though it would be better to go directly to Virginia Mason in Seattle, or to the Testicular Cancer Center at USC for best care. In addition to Dr. Nichols opinion, there is other research that proves that for these complicated cases, outcomes are significantly improved for those treated at high volume specialty centers. So this is still our hope and prayer.
One more 1/2 day of school for the year and then summer break. Kids are so stoked and I am looking forward to the stress level with them going down a bit.
Thanks again for all of your support.
Another reminder for those interested, this weekend is the Boot the Cancer event in Carpinteria. We are so grateful to Roy Lee – owner of Uncle Chen’s restaurant for organizing this event. The list of participating business mostly will have boots for collecting donations, but Uncle Chens, and Curious Cup bookstore have committed to donating a percentage of sales as well.