Tuesday,

Thank you for your faithfulness in checking for updates. We haven’t been as faithful providing updates since Bonnie was discharged last Wednesday, so this is long overdue.

After being discharged on Wednesday evening, we changed rooms within “Guest Housing” right on the Detroit Medical Center campus where I (Steve) had been staying since October 2nd. We moved from a typical “hotel” style room to a one bedroom suite, which was more like a college dorm. Using the word “suite” does not necessarily mean “sweet”, but it was adjacent to the Karmanos outpatient clinic so we can't complain too much.

On Thursday we had a day off from the clinic, so we had time to drive up to Sterling Heights to sign an open-ended lease on the apartment where we now reside. We also took time to grocery shop to stock the shelves with all the necessities needed. I did the shopping while Bonnie rested in the car.

Bonnie has been instructed to avoid crowed public places for the next several months. She basically has an immune system of an infant that is 25 days old, so she is required to wear a protective mask every time we go out the door. Even alone in the fresh air she has to wear a mask as the wind can stir up various molds and pollens that can easily cause infection.

Thursday night we had a nurse visit our little “suite” to give us instructions on how to self administer an “in-home” daily IV bag of Magnesium mixed with Sodium Chloride that runs for three hours. Combining the IV instructions along with the class/instructions on how to change Bonnie’s central line dressing as well as keeping all her medications straight is quite the challenge. She has three specific meds that are taken at 7:00 a.m., a different one at 8:00 a.m., another kind at 10:00 (actually it is 10 capsules currently, which can increase/decrease depending on her twice weekly blood lab levels), one med at 2:00 p.m., one at 6:00 p.m., and three at 10:00 (one of three being the 10 capsule med again). Including the IV bag of Magnesium from 6:00 p.m. to 9:00 p.m., as well as all the optional meds for pain and nausea, a degree in Pharmacy is not too far in the distant future.

On Friday, Bonnie had her first visit to the clinic as an outpatient. We were there for six hours or so, as in part, she needed a four hour IV infusion of a special immune booster which is determined by blood labs. Whatever the doctors look for in the “immune” area of the blood labs was lower than they would like to see, thus the booster.

On Friday Bonnie also took a little turn for the worse as it relates to some delayed chemo side effects. The doctors are leaning more towards chemo effects and not Graft v Host Disease, which normally starts showing up after 30 days post transplant (which is this coming Sunday). The side effects are puffy swollen eyes and lips as well as red blotches on her face. This she can deal with. The one thing that has become problematic is the bottom of her feet, which limits her walking because it is so painful. The chemo more or less burned the bottom of her feet, primarily thus far her heels, but it is now spreading to the underside of her toes. Imagine a giant water blister encompassing the entire underside of your foot beneath several layers of skin. The pain is quite unbearable for Bonnie and the pain meds barely touch it.

On Saturday we moved out of the “suite” and into a very well maintained, fully furnished, two bedroom apartment which is only twenty minutes away (non-rush hour) from Karmanos. If we have to be away from our "home" home, we couldn't ask to be in a better spot and are thankful for the friends who have made this available to us as long or as short as we need it.

The foot problem has temporarily ended Bonnie’s walking which is an important aspect of her recovery from the bone marrow transplant. Please pray that her feet will heal and return to normal so she can get out and exercise to continue the progress she has made thus far in the recovery stage of this journey. We did get a wheel chair so she can get outside of the four walls for a change of scenery.

We have had a number of people ask how I (Steve) am doing, so here is an update. I feel great, have a lot of energy to attend to Bonnie’s needs, my hair is growing back and the numbness in my fingers and toes seems to be less. In summary, I feel as close to normal as I have in a long time. Thank you for your continued prayers and interest. We will continue to update you as we have new information.

God bless you all.

Steve & Bonnie

Wednesday,

Discharge day! After a one day delay, Bonnie was given the green light for discharge this afternoon. At the time of this post, Bonnie is receiving an IV supplement of Magnesium. This is a supplement that she receives every day and will continue for months to come. One of the ongoing medications she is taking depletes the Magnesium level in her body and thus the need for IV. This will be administered at “home” on a daily basis over a three hour period.

The rash is stabilized and one of the chief doctors today thought it could be some Graft Versus Host Disease, but a mild case, and said she could be discharged. For now the nausea Bonnie was experience this past weekend is gone. Her feet and hands are starting to get a little sore like they did with her first rounds of chemo, so a potent cream has been subscribed that will penetrate the thick skin on the balls of her hands and feet.

As we transition to the next phase away from the friendly confines of Bone Marrow Transplant unit here on Ten Webber North, please pray that Bonnie will experience God’s incredible peace instead of an overwhelming undercurrent. On the surface it appears there is a lot to grasp in self administering meds and IVs combined with spending time every other day in the clinic as an outpatient, but in reality it is very manageable. Discharge involves meeting with: (a) the Discharge Planner who explains what is going to happen with the in-home IV and the third party company that will provide the supplies and meds; (b) the Social Worker; (c) the Pharmacist who explains all of the oral meds Bonnie will be taking, what they are for and the frequency she will be taking them; (d) the Nurse Practitioner who has been overseeing her care since day one ; and (e) the Nurse assigned to Bonnie today that has all of the discharge papers and instructions to sign, all of the “if you feel this or get that” call immediately or go to the ER.

With all this said, the doctors are very pleased with Bonnie’s progress and said she is doing very well compared to many patients. They attribute much of this to her diligence in walking everyday. The total distance Bonnie walked since being admitted was 52 miles.

Tonight through Friday we will be staying in guest housing right here on the Detroit Medical Center campus and then moving on Saturday to our temporary apartment in Sterling Heights. Our new address beginning Saturday will be:

Bonnie Opper
2968 Parkway Circle
Sterling Heights, MI 48310

We will continue to update the blog as needed and appreciate your faithfulness in checking it for updates. Once again thank you for your prayers, notes/cards, and other ways you have shown our family love and encouragement throughout this trial.

Steve & Bonnie

Tuesday,

Leukemia, lymphoma, treatments and transplants limits one’s planning ability, including last minute plans. What we thought would be a day of transition and discharge from the hospital all changed and were postponed. Yes, we were planning to move Bonnie to outpatient housing today, but in hindsight, we are grateful for cautious doctors.

The rash on Bonnie’s face has gotten a little worse compared to yesterday and the physician on rotation without much debate said “let’s keep her for another day of observation”. In other words, they are concerned about rashes, as that can be a sign of Graft Versus Host Disease (GVHD) which is essentially Bonnie’s remaining cells fighting the donor’s cells. The doctors wrote an order for a steroid cream that will confirm whether or not what she has is indeed GVHD. If the rash goes away using the cream, this is an indicator that she has GVHD and they will keep her here longer and give her some form of steroid IV. If the rash remains using the cream, it is just a viral issue and they will discharge Bonnie. It seems odd that if the rash goes away “we’ll keep you” and if it stays “you’re free to go”. Bottom line is the doctor’s objective is to minimize the GVHD and keep it out of Bonnie’s GI tract.

It is a little challenging contemplating how to pray for this specific situation, so we are just praying and asking God to do His perfect will that will glorify Himself and at the same time to help us to be content with either outcome. Contentment is easier said than done, yet we know that is what God expects from us no matter the situation we face. We’ve said this more than once, with God there is no such thing as coincidence. Just today I (Steve) read in my daily Bible reading for October 27th, 1 Timothy 6:6-8:

“Now godliness with contentment is great gain. For we brought nothing into this world, and it is certain we can carry nothing out. And having food and clothing, with these we shall be content.”

We have very gifted and competent health care professionals that God has provided to care for Bonnie, and in this “we shall be content.”

Steve & Bonnie

Monday,

It appears as though Bonnie will be discharged tomorrow and we will be entering the next phase of her bone marrow transplant. The discharge is predicated on Bonnie’s ability to swallow a couple of different pills that are a little larger as a replacement to the current IV for of the same medicine. Up until today, Bonnie’s throat has been so severe she has been able to swallow any solid food and it was difficult making sure liquids were going down the right pipe without choking.

The sores in Bonnie’s mouth have healed up well and the remnant left in her throat must be doing the same as she was able to take the medicines this afternoon orally. Assuming her blood numbers continue as they are, there is no reason for her to stay beyond tomorrow, so we will transition to outpatient housing.

We will initially stay in the same facility I (Steve) am staying at right here at the Detroit Medical Center, although we will move into a one-bedroom suite for a little more room. By the end of the week or the first part of next week, we will move to a fully furnished two bedroom apartment in Sterling Heights, which is approximately 20 minutes from the Karmanos Cancer Center.

At the onset of being in outpatient status, Bonnie will most likely be required to go to the clinic three times each week and sometimes it will entail an entire day. A lot of it will depend on how well Bonnie is doing as she gets further out from the transplant day.

Now that the white blood cell count seems to have stabilized and her numbers look good, the WBC are starting to do what they are suppose to do, thus the healing of the mucositis (mouth and throat sores). As Bonnie’s cells continue to die off and the donor’s stem cells continue to produce new cells, Bonnie’s blood type will eventually change to match the donor’s blood type.

Please continue to pray that the Graft Versus Host Disease, which will most likely surface sometime during the first 100 days or so, is minimal. As mentioned previously, the doctors want to see some limited GVHD as this is important in eliminating the genes that are responsible for the leukemia returning. Also pray for Bonnie’s anxiousness as she anticipates leaving the safe confines of the hospital. We have heard and seen many stories of transplant patients who left only to be readmitted a few days later through the ER and ending up back here in the Transplant Unit. It’s very easy to see small changes, like oozing from the eye and small patchy rashes forming on Bonnie’s face combined with the element of the unknown of “what’s next” that creates a level of fear and anxiety.

Our faith and trust continue in the Lord as He is all we need for our security which is the hope we hold onto. It is comforting and reassuring to know that the Psalmist in Psalm 119:71 said “It is good for me that I have been afflicted, that I may learn Your statues.” We are grateful to God for this trial as He has revealed more of Himself to us and has drawn us nearer to Him, as we traverse through the daily challenges.

Steve & Bonnie

Friday,

Bonnie’s transplant was two weeks ago today and she continues to make progress in the doctors’ eyes. This is based on primarily her blood counts, which have come back in a significant way. Her white blood cell (WBC) count is currently at 10,300 (on the blog post Tuesday she was at 5200) and her hemoglobin is slowly increasing to 10.1. Last week it dropped below 8.0 which required two units of red blood cells. Thus far she has not needed any additional transfusions. The platelets are usually last to engraft. Normal range again is between 100,000 and 150,000. With the chemo Bonnie’s fell to a low of 19,000, but since the transplant they have steadily multiplied and currently at 268,000.

We have asked the doctors if there is any concern about these counts exceeding the normal range and they have said no. The new stem cells have responded very well to the Neupogen injections that stimulate the bone marrow to create new cells. So from this perspective is why the doctors say that Bonnie is making good progress.

The downside is that the mucositis continues to get worse, but somewhat expected. The doctors indicated that it takes approximately 7 days on average for the mucositis to run its course. It has spread throughout Bonnie’s mouth and down into her throat and esophagus and continues to periodically cause nausea, so please pray that the new WBC (the neutrophils) will start to attack the sores and begin the healing process before it spreads into her intestines. The thought of recurring intestinal issues is a source of anxiety for Bonnie as she knows firsthand what it is like from her initial 58 day stay at Sparrow earlier this year.

The projected date for discharge is now next Tuesday October 27th. This is subject to Bonnie being able to take oral medicines as well as eating solid foods. So that is the goal. She continues to walk a minimum of two miles each day (today it was closer to three).

We are grateful for your faithfulness in praying for Bonnie and can attest to the incredible peace and spiritual strength we have as a result of your prayers. Because of this, as well as a wide circulation of this blog (from England to the West Coast of the U.S.) we are asking you to join with us in praying for a dear friend of ours, Mary Grace, who back in May, at the beginning of Bonnie’s diagnosis, jumped right in and started coordinating meals for our family. Mary Grace had a horrible injury earlier this week involving her eye. Please pray for healing and restoration of her sight in the eye and for an overwhelming peace as well as spiritual strength for her and her family.

Thanks.

Steve & Bonnie

Tuesday,

After the most miserable night of pain and nausea, we received wonderful news from the doctors this morning that the donor stem cells have engrafted in Bonnie’s bone marrow cavity! This was the next step in the process we have been patiently waiting for. Overnight, her White Blood Cell (WBC) count went from 600 to 5200 which indicates engraftment.

We are rejoicing and thanking God for this news. We are grateful that He created us humans with incredible minds and bodies. Giving us as people the minds to develop medical procedures like a bone marrow transplant using stem cells from a donor along with His creation of a complex stem cell having a protein as part of its makeup that instinctively knows to penetrate the bone and reside in the bone marrow cavity to begin to produce new blood cells. All glory and honor and praise belong to Him alone.

With the WBC count coming back, the mucositis (mouth and throat sores) will slowly start to subside, but for now it is somewhat worse than yesterday, so Bonnie is still uncomfortable and in significant pain. As soon as she can get to where she can take most of the medications orally as opposed to IV form she will be discharged from the hospital and moved to outpatient housing. This could occur as early as this Friday or next Monday. This is about a week earlier than expected.

One thing that has helped in the process is Bonnie’s diligence in walking. In yesterday’s blog post, I speculated that before the evening was over that she would finish the balance of her two mile goal, which she did. Even though the night was long for her, she already got her two miles in today as well.

The nausea continues today and the anti-nausea medication isn’t helping too much in keeping down the little bit of Ensure, Breeze or chicken broth she drinks. Continue to pray that the nausea will subside.

The Graft versus Host Disease (GVHD) is not part of any of the side effects Bonnie is currently experiencing. GVHD will show up in some form typically between 30 and 100 days post transplant. So Bonnie is still very susceptible to complications, but for now we are rejoicing that she is moving towards the next step of outpatient housing. This phase will still require us to stay in the Detroit region for approximately the next 75 or so days. The actual time depends on her progress and the frequency of visits to the outpatient clinic which is part of this hospital.

Thank you for your continued interest in Bonnie’s progress. We appreciate all your prayers.

Steve & Bonnie

Monday,

Today is Day +10 following Bonnie’s transplant and the storm is coming on shore. The mouth sores (mucositus) started yesterday and is working its way down Bonnie’s throat. She is quite uncomfortable with pain and finds it extremely difficult to talk or swallow anything. The entire GI tract has fast producing cells, and when the white blood cell count is low, there are no new cells being created in the GI tract as part of the body’s way of functioning properly. The result is the painful sores that take over and can potentially span the entire GI tract.

To offset the pain, the clinic uses Morphine or Dilaudid, which Bonnie has been on since yesterday. The Dilaudid (stronger than Morphine) is great for the pain, but the most nauseating narcotic, so that adds to the complications. Ativan is used to counter the nausea, but has side effects similar to Valium.

Bonnie’s WBC counts are reaching the lowest point, along with her hemoglobin and platelets. The hemoglobin was low enough today requiring two transfusions of red blood cells. Low hemoglobin causes excessive fatigue.

Combining the Dilaudid, which in and of itself has fatigue/tiredness as a side effect, along with Ativan and low hemoglobin, creates a recipe for extreme sleepiness. It is difficult however for Bonnie to rest peacefully as the mucositis causes the salivary glands to secrete excess mucus which chokes her and wakes her.

Last night as well as tonight she has spiked a fever of 100.5 which triggers a standard protocol of a chest x-ray, blood cultures plus antibiotics, antiviral and antifungal medicines. The fever could mean infection, but it also could be from Neupogen injections or the beginning stages of engraftment. Because it is uncertain at this juncture, the doctors keep a close eye on Bonnie as she is most vulnerable for infection at this stage in the process due to her low blood cell count.

All said, this is very much the norm for a bone marrow transplant patient. We have seen similar things occur with our neighbor who received his transplant two days before Bonnie. Over the weekend he was very sick, yet already today the doctors see great improvement and indicated that he might be able to move to “outpatient” status by the end of the week. Every case is different, but Bonnie’s has tracked similarly to our neighbor, so there is some possible light at the end of this initial tunnel. Our neighbor’s spouse used the analogy of being at war on the battle field and crawling out of one fox hole of safety through the mine field to another fox hole of safety. It’s a necessary step in the process.

Nutrition is always a key factor and somewhat challenging when you can’t swallow, even with the pain medications. With the mucositis, it can cover the reflux area making it a challenge of knowing for sure that you are getting a supplement drink like Ensure down the right pipe, without filling your lungs. Picture trying to concentrate on getting a drink down the right pipe, while you experience intense pain and barely awake enough to know what you’re doing. That sums up in a nutshell what Bonnie has experienced today.

Sharing this is not meant for you to feel sorry for Bonnie, in fact if she were coherent enough she would probably not approve of the descriptive nature of this post. Those of you who know Bonnie well, know that it’s not like her to bring any attention to herself, but I (Steve) wanted you to have an accurate picture of what she is dealing with so you can know specifically how to pray for her at this point in the journey.

The new stem cells are working their way to the bone marrow cavity and hopefully will engraft soon, which means they will start to produce new blood cells. So in addition to praying for comfort in the midst of the storm, please pray that the donor stem cells will indeed engraft sooner than later and that the white blood cell count will begin to rise quickly which one of the benefits will be the healing of the mucositis.

Bonnie’s attitude continues to remain unwavering and in the middle of the mental and physical fog she still has determination. She realizes the importance of walking and moving about. Yesterday she still walked two miles and today she has gone about 1 ¼ miles holding onto my belt loop to steady herself. It would not surprise me for her to stir and wake later this evening and say that she wants to get the rest of her laps in to reach her goal of two miles. Thus far we have walked approximately 35 ¼ miles since she was admitted on October 2nd.

We face each day confidently knowing that so many are lifting our name up to God, who is so incredibly great and mighty, yet so incredibly personable. It is He who we draw our strength and perseverance from. Please pray that we will be faithful to Him in all things, including this challenge He has allowed us to endure and for the opportunity He has given each of us for spiritual growth. Thank you again for all your prayers.

Steve & Bonnie