Over the past 10 days, Jeremy’s neurological issues have continued to improve. On Wednesday, the doctors started the third round of chemo which ended yesterday. Jeremy’s facial paralysis has gotten a bit worse, but in general, he has been stronger this round as compared to last. Last night he had another MRI so doctors can better understand what is happening in Jeremy’s brain. All tests indicate he is having a reaction to the chemotherapy. This could be the general chemotherapy or the chemotherapy that is administered directly to the brain. While there is a very small chance Jeremy’s neurological issues could be connected to the cancer, the doctors feel that isn’t very likely. We are thankful that it has been several weeks since any cancer cells have been found in Jeremy’s spinal fluids, which is the main indicator doctors use to see if the cancer is in his brain or central nervous system.
As is typical for Jeremy’s chemo regime, Jeremy will be released from the hospital for up to 3 weeks before he must return to the hospital for the fourth round of chemo sometime mid-September. However, he will have numerous doctor’s appointments each week. Please pray that Jeremy has a long, restful time at home and remains healthy during this discharge period. We anticipate him feeling more weak, tired and even sick this first week he is home because that is when the chemo will have had the most impact. Pray he steadily gets stronger and can resume as many “normal” activities as possible. He is eager to participate in our family life and sending our kids off to school, etc.
On Friday we met with the stem cell transplant doctor. The “plan” for Jeremy as of today is for him to have the fourth round of chemo sometime in September. After that, the doctor’s will “stage” Jeremy’s cancer, meaning they will run a serious of tests to determine if the cancer is in remission or gone completely. We have been told Mantle Cell Lymphoma typically responds very well to chemo, so we are anticipating a positive outcome to those tests. Pending those results, Jeremy will begin preparation for his stem cell transplant. This will involve removing Jeremy’s “healthy” stem cells, freezing them, giving Jeremy a massive amount of chemotherapy over 5 days, essentially killing his entire immune system, and then putting his own healthy stem cells back into his body. This initial process only takes a couple of weeks but Jeremy will need to be in the hospital for 4-6 weeks in order to recover. While there are dangers in this process, the doctor told us the mortality rate is about 5% and at Rush it is 1%.
In order for the stem cell transplant to be the most beneficial, Jeremy needs to be as strong as possible. The doctor told Jeremy he has about 10 weeks to get stronger, meaning walk more, engage in mentally stimulating activities and eat as much as he can. The stronger Jeremy is prior to the procedure, the easier it will be from him to “recover” after. Jeremy has taken this very seriously and has already set goals for himself as he prepares for this. Please pray for him during these next 10 or so weeks. Pray he is not discouraged by any setbacks he experiences. Pray he is able to get stronger.
The two main concerns related to the stem cell transplant are: 1) Risk of infections – since Jeremy won’t have an immune system, the risk of life-threatening infections is high. And, since Jeremy has also battled some serious infections and fevers over these past two months, he is, in some respect, at greater risk for those infections during the stem cell transplant process. 2) Neurological impact – since the doctor’s believe the chemotherapy is impacting Jeremy’s neurologic functions, it is very important they determine which drug specifically is causing this. The main concern here is that the massive amount of chemo needed for the stem cell transplant could cause serious damage to Jeremy. Please pray the doctors get the right answers and prepare for the stem cell transplant in the way that will give Jeremy the very best outcome.
During the discussion with the doctor, after going through all of the risks involved, we discussed how the stem cell transplant is really the only option we have in spite of the risks. Jeremy mentioned that, at this point, he didn’t think it was likely he’d be able to walk his daughters down the aisle someday. To this, the doctor immediately replied: “Oh, no. Don’t say that. I don’t think you have any reason to say that right now. Current research indicates that 80% of patients with Mantle Cell lymphoma that get a stem cell transplant are cancer free 10 years later. The only reason I can’t say it is longer is because the research is still too new.” That was a very encouraging response.
While we have a long and difficult road ahead of us, we do have reason to continue to hope. Thanks to the internet, I have found blogs from people who have gone a long time without having Mantle Cell Lymphoma return. I have also found people who have had to continue to battle it even after the stem cell transplant. It is a wicked form of lymphoma and your prayers in fighting it are ever so needed.
Please pray Jeremy does well over these next few weeks at home, during his fourth round of chemo next month and that he and the doctors are fully prepared for the stem cell transplant. Pray all cancer cells are gone when the stem cell transplant is done (giving him the best outcome) and pray the stem cell transplant is successful, meaning Jeremy is able to go a long time without it returning. Thank you!!!