Monthly Archives: August 2013

I am so proud if Jeremy’s determination and his attitude

I spoke with Jeremy this morning by phone. Things are going well, his body is responding well to the antibiotics and his vitals are good. We have been told that the doctors were working towards getting Jeremy out of the hospital ASAP, but now I’m starting to think we have different definitions of what that means. The only thing keeping Jeremy in the hospital is the identification of the third bug in his body. The are giving him a range of meds and clearly one is working, but they don’t know which med it is and he won’t be released until that’s identified so we go home with the correct medication plan. The hope was that he’d be ready for discharge this weekend.

However, it is a holiday weekend and the doctor schedule a procedure for Tuesday that they have done as outpatient and telling Jeremy he won’t be released until 24 or 48 hours after that procedure…meaning he won’t be released until Wednesday at the earliest. I may start to get my battle gear…we love and trust these docs but Jeremy is greatly affected by the long, seemingly pointless days in the hospital away from his family and “normal” life. This is a big week for us as two of kids will be starting school and we have orientations and first day of class. Jeremy really wants to be here for all of this. It wouldn’t be so hard if he were in a serious condition, but that really isn’t the case right now. At this point in his chemo cycle he is only getting stronger and it will be hard for this portion of the cycle for him to be stuck in the hospital. Remember, he is supposed to be admitted back into the hospital in a short while for his fourth round of chemo.

Jeremy is very goal oriented and actually quite disciplined when it comes to making preparations for a big task. Since he has to be strong and healthy for the stem cell transplant, he has set several goals for himself so he can “get strong” as he prepares for that procedure. The hospital is not a conducive place for him to eat, exercise or meet his goals. This could be discouraging for him.

I am so proud if his determination and his attitude. I would be lying if I didn’t share his discouragement at times. Last night was a pretty raw night for us and he cried as he talked about his fears of making it through but not recovering (meaning the cancer returns or the transplant goes badly) and how sad he feels to have “lost” this summer as he has been in the hospital for 95% of it. He still has faith and is strong, but his current circumstances aren’t a catalyst for positivity.

Please continue praying for him and us. Given what we know right now of Jeremy’s stay in the hospital, I will need to figure out evening childcare so I can visit him. All of this is hard but this week it feels extra heavy in terms of feeling frustrated and lacking control, things not going how we want or hoped. We are grateful we are not in a serious or dangerous place regarding Jeremy’s vitals, response to meds, etc. At the same time, I believe mental and emotional health are very important, too. Thanks for your prayers.
~~ Angela

Garage sale tomorrow morning

Call me crazy, but we are having a garage sale tomorrow morning (isn’t that what everyone does after spending dome time with a loved one in the ICU?). 8am til noonish (may stay open later if we have good reason to).

Selling typical garage sale fare, mostly random things, baby stuff, boys clothes 4t and under, infant girl clothes, massage chair, exercise bike and more.

Eliana will be selling lemonade and most of her stuffed animals (or toys will be free with purchase of drink). We’re letting Eliana do this her way .

Stop by and see us and tell your friends! 420 Claremont West Chicago.

~~ Angela

Our poor pathetic puppy broke his leg

While we were away at the ICU our poor pathetic puppy broke his leg. I don’t know why seeing him in his cast makes me laugh so much…it’s the crazy combo of feeling sorry for him and thinking he looks too funny. The upside, this escape artist won’t be jumping the fence and roaming the neighborhood any time soon.

He’s out of the ICU

Jeremy called from the hospital to let me know they will be moving him out of the ICU today and back to his “home away from home”, the oncology floor of Rush University Medical Center. Hopefully he’ll only need to be there for monitoring for a short stay.

Again, we thank you for praying with us and for us these past few days. God bless.

~~ Angela

The truth is self-evident

Sometimes in the middle of the big battles of our lives, we look for the BIG miracles. We all want to be part of the stories such as the ones where the medical team looks on in surprise and says, “We can’t explain it. We thought you were beyond help and now look, you are cured.” And testimonies of these kind of stories abound in public witness.

When we began this long journey into cancer with our son and his wife, Angela, someone wrote that we would see God’s hand of providence in amazing ways. Two days ago, my daughter Melissa Timberlake and I took Jer into the Rush oncology/hematology unit in Oak Park hospital. When we left the house, his temp was normal. His temp began to spike as we sat in the waiting room and rose even after it was taken in the examining room. At the same time, his blood pressure was dropping, his fatigue was palpable, his lips whitening.

On call that morning was the personal physician’s assistant who has been following and orchestrating the care teams for Jeremy’s specialist, Dr. Parmeswaran Venugopal, head of the unit at Rush University Hospital. She was charmingly adamant about not admitting him and started a intravenous line with antibiotics so “there would be no delay in treatment”.

By the time we were in the ER room at Oak Park Hospital, Jeremy was going into full-scale sepsis shock (sepsis is when the bacterial infection spreads through the bloodstream). In his neutrapenic condition (no white blood cells due to the recent chemo cycle), a normal temperature simply meant that he had no front line internal warriors to fight off the encroaching enemy. After being stabilized (six to eight medicals on the ER team), an ambulance carried him down into the city to Rush University ICU with Angela, who had now arrived, following them in her car.

Melissa and I went home exhausted. We had witnessed something akin to intervention in a near-death scenario. When, later, I researched sepsis online, I discovered that some 258,000 people die of sepsis each tear–a vast number of them young and perfectly healthy. It is a medical emergency that requires early detection and treatment for survival. And when I read the symptoms of septic shock, I realized that we had witnessed most of them.

In the quiet of that research, I could clearly count out the BIG miracle. If our appointment had been at 2:00 instead of 12:00, intervention might have been too late and in a place with no record of my son’s medical history. If we had arrived for the first appointment of the day, perhaps Jeremy’s sepsis onset would have started after we returned home. Jen, Dr. Venugopal’s personal medical assistant, might not have been present . . . I could go on, but you get the idea. By God’s prevenient grace, we were in the right place at the right time with the right personnel who had the right professional knowledge. The unknown cannot be orchestrated well by humans. I am convinced that the word “coincidence” is not in God’s vocabulary.

What can I say? For me, the truth is self-evident. We deeply thank you for your prayers.
~~ Karen Mains

Things have remained stable

Time for me to say goodnight to my beloved and head home. Things have remained stable, Jeremy is responding well but will likely need on going treatment and monitoring for the next several days. Best case scenario is that he stays in the ICU 1 or 2 more nights before being transferred to a regular room for 2 or 3 nights. We are hoping he is home and well by Monday or Tuesday. He is eager to be home for our kids first day of school.

Here he is taking a drink at the end of this long day. He made me laugh when he referred to his “ET finger”.

~~ Angela

Jeremy is such a resilient guy!

Jeremy is still responding well to the interventions. He is such a resilient guy!

It appears there are many bugs in his system, several of which are resistant to antibiotics. This is a big concern for the doctors given Jeremy has no immune system. They are working on addressing the various bugs but we need continued prayers that the meds and Jeremy’s body can overcome this. Each doctor seems very pleased with how well Jeremy is doing but he is not out of the woods. Thanks for your continued prayers.

~~ Angela

I think it will be a good day

Good morning. I think it will be a good day

Jeremy is still in the ICU and they worked all night to stabilize him. He is still in a serious situation but is in a better place now that he is stable and vitals are good.

Doctors have found two different “nasty” bugs growing in his bloodstream. Last night they put almost every antibiotic they could in him but it may be several days before they identify the bacteria and treat it properly. There is still concern that he will respond well given his non-existent immune system but this morning the doctor was encouraged by how Jeremy has responded so far but said things are still serious. Please keep praying and thank you for doing so!

~~ Angela

Your prayers are being heard and honored

Ladies and gentleman, your prayers are being heard and honored. Right now Jeremy’s blood pressure is 111/62, a great improvement from the 73/48 that it was for most of this evening (despite the interventions being performed at that time). While it is likely his bp is up due to meds, it is also by God’s great grace. Thank you for praying for us and with us. Please continue to do so. We needs his bp to stay up, we need the infection to get resolved and for Jeremy to get well. We are still in a dangerous place, but as we’ve experienced many times before, this ray of hope is so encouraging.

Please continue praying for Jeremy. He will need on-going prayer support. You have all been so encouraging to us. Thank you!!!

On another note:
Is it just me, or is this one seriously strong man??? (who is greatly loved by an awesome God) 

~~ Angela

Our Jeremy is back in the ICU

Our son, Jeremy Mains, is back in the ICU unit at Rush Hospital in Chicago. After a long day spent in the emergency room battling a rising temperature, racing heart rate, and falling blood pressure, it was determined that he has a systemic infection–meaning there is an infection in his blood stream. We’re asking for prayers for our son as the next 12 to 24 hours he is in critical condition. He is in the neutropenic stage of battling lymphoma which means he does not have white blood cells to help him fight off this infection. We believe God is faithful and deeply appreciate the prayers of our friends across the globe. Please forward this to those you know who are prayer warriors.

~~ Karen Mains

Jeremy is very, very sick

The ICU doctors have explained that Jeremy is very, very sick. The next 12 to 24 hours will be crucial. They said he is in septic shock – they believe he has a blood infections. They are preparing to give him platelets and pull his PICC line out (thinking it is now contaminated). They have emphasized the seriousness of his situation, given where his immune system is and the fact that he has just had massive amounts of chemo. We covet your prayers tonight. Thank you.

~~ Angela

Jeremy is in the ICU

Waiting in the waiting room while they get Jer settled in his new room in the ICU. Not much to report yet.

One thing that wasn’t so fun (not that any of this is) was being able to follow the ambulance that transferred Jer from Rush Oak Park to Rush University and watching the lights flashing. A bit terrifying not knowing what was happening inside. What was worse was that I could see the ambulance for my entire commute and arrived at Jer’s room very shortly after they did – the traffic was so bad, the ambulance didn’t go much faster than the rest of us.

Right now we know Jeremy spiked a fever while at the clinic. Since he is nutrapenic, meaning his the chemo has brought his immune system, a fever can be very dangerous. So far they have ruled out pneumonia so we are waiting for blood test results. The other concern is that Jeremy’s blood pressure was very low, causing concern. I feel strangely calm. Jeremy is very disappointed about being back in the hospital. Right now I am very eager to get out of this waiting room so I can be with Jeremy.

Thanks for your continued prayers.

~~ Angela

Jeremey is Back at Rush

Last night I was a bit concerned about Jeremy’s fatigue and some other issues he was having. Since it wasn’t an emergency (no fever, etc), I talked with his doctor and made an appointment for him to go to the clinic in Oak Park today just to be checked out. My in-laws, David AndKaren Mains, and sister in-law, Melissa Mains Timberlake, took Jeremy to his appointment at noon. While there, he spiked a fever and his blood pressure was dropping. While he really didn’t want to be admitted, you can’t argue with a fever at the clinic, so he was transferred to the ER at Rush Oak Park where they will stabilize him and then transfer him to main hospital, Rush University Medical Center, at some point soon. This way he can be back with the nurses on the oncology floor he knows I know he is disappointed about this development but I am so grateful we got that appointment for today. It would have been scary and stressful to deal with a fever on our own. Right now they suspect he has an infection and they have already begun the antibiotics to fight it.

Thanks for praying they discover the source of the infection and treat it and that Jeremy won’t need to stay in the hospital too long. The concern is, given he just had chemo recently, his immune system is quite compromised, so they take infections very seriously. We are praying it is addressed quickly so he can have a few more days at home before they do the fourth round of chemo which is scheduled as an in-patient procedure in just a couple of weeks. Thanks so much!

~~ Angela

We are Hopeful

Jeremy is doing OK but feeling the full impact of his most recent round of chemo. He is also experiencing the side effects of steroids, another component of his treatment plan. Imagine feeling extreme fatigue but unable to relax enough to fall asleep and you’ll have some understanding go what Jeremy is experiencing.

He is up frequently throughout the night. Because of his mess, he is very unstable and prone to falling. It is quite alarming when he gets up at 12, 2, 3, 4, 5am very restless, wanting food or drink. Due to his propensity to fall, it could be a serious situation. After 3 nights of this, I was SO grateful to my mother in-law, Karen Mains, spent the night with us, helping Jeremy walk around, get food or drink, etc. That was amazingly helpful.

Due to Jeremy’s fatigue and some other issues, we scheduled an appointment at the clinic for Today to check Jeremy’s blood counts, etc. we are hopeful we can get Jeremy something to help him gain strength more quickly.

Thanks for your on-going prayers.

~~ Angela

Today is day 13 in Jeremy’s chemo cycle

Jeremy has been home for six days and has worked hard to get stronger. He insists on trying to eat something each meal and walking our street.

Today my parents took our kids to TN for the week. Jeremy only has one doctor’s appointment this week, so we are really looking forward to enjoying this week together.

Today is day 13 in Jeremy’s chemo cycle and we were told he will be at his lowest point between days 10 and 14, so we are right in the middle of it. Jeremy is taking it very easy today. Other than the fatigue and feeling extra weak, he has been doing well. Please keep praying for him. It would be awesome if Jeremy could go the next two weeks or so without incident.

The plan is for Jeremy to be home another 10 to 14 days before being readmitted to Rush for what will hopefully be his last round of chemo before his stem cell transplant. Thanks for your continued prayers!

~~ Angela

China holds a special place in our hearts

We are delighted with the recent contact we’ve had from our former students from China!

Some of you may know how Jeremy and I met…He taught English in Nanchong, Sichuan Province, China from 1996-1998 at SWPI. I taught English at the same school from 2000 – 2002. I even lived in the same apartment that Jeremy had lived in. Even though students often talked about the ever popular foreign teacher named Jeremy, he and I didn’t actually meet until I returned to the States. I was working on a project for grad school that led me to Jeremy’s office where we were able to discuss our “China connection”. We got married one year later and then went back to China, to a different city, to live and work together.

All this to say, China holds a special place in our hearts and it is wonderful hearing from our friends from so long ago!

~~ Angela

Today, O Lord, show us all a sign of your favor . . .

Jeremy has this way of saying, “Mom. Would you mind doing a favor for me?” Since four of the words in this question contain consonants that are hard to pronounce due to his bilateral facial palsy–m’s and f’s–sometimes I have to lean in to catch his meaning. I’m finding myself saying (A LOT), “Sorry Jer, I didn’t catch that.” But eventually, I get this familiar Jeremy-phrase. Most of the time, since we’ve been spending hours in the closer Lisle Rush clinic, he’s been asking if I would rub his back or massage his feet, which I am always happy to do, though I feel it in my back and shoulders the next morning.

I have to also admit that I don’t hear as well as I used to, so some of my need for repetition is also because ambient noises and slurred consonants are out of my range. (Please don’t tell David since I’m the one nagging him about getting his hearing checked.)

Today, as I was reading through Psalm 86, I decided to write out all the requests the psalmist makes in this one passage: “Incline thy ear and answer me . . . Preserve my life . . . save thy servant . . . Gladden the soul . . .” And on and on.

I try not to beg and plead from God. Having walked with Him now for decades, I consider the begging prayer to be one that insults what I know of his “mercy and steadfast love and his graciousness” (verse 15).

However, because of Jeremy’s constant question during these days when he is in need of so much loving favor, I was struck with David’s prayer in verse 17, “Show me a sign of thy favor . . .”

I am not so old a child of God that I, like my beloved son, in this long and hard battle against lymphoma, don’t need occasional loving favors from my Heavenly Father, who is never hard of hearing and who willingly and eagerly bends to massage the bruises and aches of a weary soul.

Today, O Lord, show us all a sign of your favor . . .

~~ Karen Mains

We’d appreciate an unused phone

As I mentioned before, Jeremy’s phone was stolen at the hospital. It happened while he was raking a morning nap. His nurse felt really bad

If you have an unused phone lying around that Jeremy could use, we’d appreciate it. We use Verizon and I think it should be as easy as us taking the phone in so they can add his account to it. Thanks.

~~ Angela

Life goes on

Jeremy is home and has quite the full schedule! Three appointments at the clinic this week. He is very tired but happy to be home, doing as many “normal” things as possible. Since he recently received chemo, we are expecting him to feel those effects through the end of this week and then he should be only get stronger.

Life goes on for the rest of us. Eliana starts full day kindergarten in a couple of weeks while Nehemiah will attend preschool have the day. Anelise is growing so fast – doing the army crawl, pulling herself up to stand and feeding herself. I am so grateful to have Jeremy home for these special days.

~~ Angela

Update on Jeremy and Prayer Requests

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!!!

~~ Angela