It happens frequently. A medical professional new to Lorelei's case will ask "So, when did you relapse?" She answers "I haven't relapsed; I've never been in remission. Apparently my cancer is of my own DNA and it's very stubborn." One well meaning but slightly insensitive medical professional even queried prior to a recent pre-transplant procedure "Shouldn't you be in remission before an allogeneic transplant?" Well, yeah, that's the desired scenario. But that's not what we have here.
It makes me think. It just doesn't seem fair that a 17 year old little girl (remember she's my baby) should have to endure all this in just two years: six surgeries, nine PET scans, four holes drilled into her hips for bone marrow biopsy, six months of ABVD chemo, 3 rounds of R-ICE chemo, an autologous bone marrow stem cell transplant, preparation for Proton Therapy twice only to end up receiving 22 days of IMRT radiation, four rounds of Brentuximab immunotherapy, enrolling and withdrawing from college twice while all her friends' lives go on as planned, countless blood transfusions, 13 Lupron injections, and four months at MD Anderson for an allogeneic bone marrow stem cell transplant. Not fair.
Yesterday our pastor preached a sermon. I think it was about endurance. But heck, it could have been about something completely different but God used it to speak to me about endurance. I noted on my phone (because I'm not "spiritual enough" for the old ink on paper method; my Bible is on my phone) a passage from James 1:2-4 and these words: "Provision is all God's doing; My job is just to endure."
"2 Consider it all joy, my brethren, when you encounter various trials, 3 knowing that the testing of your faith produces endurance. 4 And let endurance have its perfect result, so that you may be perfect and complete, lacking in nothing."
Did you catch that? "When you encounter various trials." We all face trials. We aren't to consider the trials of others, just our own. The kicker is that we are to consider them all joy. And we are to trust that God is working in them to build in us the endurance necessary for the ultimate goal of being complete, lacking in nothing. We endure. He completes us.
Are we done yet? How much more complete can one be? I ask these questions already knowing the answers. As long as we walk this earth we're "not done yet."
So, it is with joy (as we have considered it) that we embark on this next journey.
We're not in Houston yet. There's been a delay. The original plan was to complete all of Lorelei's pre-transplant testing in Houston the last week of June, go on a brief fishing trip and then return to Houston to begin the transplant today. But, as always with cancer, the plan changed.
Lorelei's doctors have recommend she participate in a clinical trial along with the traditional allogeneic bone marrow stem cell transplant process. Because the trial guidelines require a patient have at least 4 weeks between the last day of radiation and the first day of the transplant we've had to delay the transplant. Hopefully we can get it started next week but nothing is ever set in stone. First she needs to have a doppler/sonogram study of her heart and blood system so they can determine the best way to place her triple lumen Hickman catheter. We're praying they can place it again in her chest (same place as the three previous access points) but they want to make sure her veins are not occluded from previous treatment insult and recent radiation to that area. The other placement options are not at all desirable (jugular or femoral.) Please pray they can place it in her chest. No concern over an eighth scar there when you already have seven.
The clinical trial is kind of a fun one. Of course, the actual transplant will be performed as already FDA approved, but the trial part involves the use of the medications to prevent GVHD (Graft vs. Host Disease.) It turns out that Hannah and Lorelei are a perfect HLA match. This minimizes the likelihood of Lorelei experiencing GVHD. So, they will be testing the success of tapering down the anti-rejection medication earlier than in a less matched transplant. Yay for matching! It's like I gave birth to twins five years apart.
Lorelei got to take a little "C-cation" last week as we flew to beautiful Sitka, Alaska to go fishing. Thank you to an un-named benefactor for your assistance in funding this trip. Because of the Big C, Lorelei never got to go on a senior trip or a graduation trip so this was kind of a big deal. And her neck had healed up well enough that she was able to enjoy the trip with minimal pain. She even got to bring Bradley along! Knowing she'll be in isolation with the next transplant and unable to see Brad for quite a while made this time with him very precious.
We'll be driving down to Houston without much of a plan. It's easier that way. We've learned that plans usually change, so why bother making them?! What we do know is that we will drive our own car. And that once she is admitted to the hospital we won't need to rent an apartment or hotel for a while because I'll stay with her 24/7 in the hospital. MD Anderson's pediatric transplant facility on the 9th floor was just remodeled and is fantastic. They even have a bed for me in her room. Lorelei was most excited about the game room. It has a basketball goal! She'd hoping to convince Kevin Durant to pay a visit toward the beginning of August. Since, after all, MD Anderson is part of the University of Texas. Maybe he can even bring Monica along. I know Lorelei would love to meet her too.
After Lorelei is released from the hospital we'll need to find longer term accommodations in an apartment since she needs to remain in Houston for 100 days. But we'll cross that bridge when we come to it. We know God will provide. He always does. All we have to do is endure.
Posted on Mon, July 8, 2013
by Andrea Decker