Saturday, December 18, 2010

Only By God's Grace

December 18, 2010

It's been exactly one week since Bonnie went home to be with the Lord. In some respects is seems just like yesterday we were with her in the hospital as her soul was lifted from her body and united with Christ's for eternity. In other respects, it seems like this was just a difficult dream and at any time she'll pull into the driveway and open the door to say "I'm home!". The reality is, Bonnie IS home and she has been healed and has no more pain or suffering.

Reality is also setting in for us as the memorial service is now behind us and a NEW "new normal" is ahead of us and still unknown to us what it looks like. The initial "new normal" following Bonnie's bone marrow transplant never fully developed, so we need to regroup and refocus. The four of us are going to spend some much needed R & R time alone together over the Christmas break.

Please continue to pray that God will fill the void in our home and that He will give me the gentleness and compassion of a mother's comforting touch that children, no matter their age, earnestly yearn for during trials. Also pray that a plan will come together in the next couple of weeks in order to continue Caleb's and Callie's home education for the balance of this school year, including Caleb's graduation. We have close friends working on ideas while the four of us are doing our R & R.

Thank you for your prayers for Cassandra during finals at Spring Arbor. She received confirmation that she got 4 pts in both her Communications and Rhetoric classes. She has an incomplete currently in her Constitutional Law as well as her International Conflict Business Management class as she missed both classes on Wednesday for the memorial service. The faculty at Spring Arbor have been incredible working with Cassandra throughout this entire ordeal. We are grateful to them for creating an environment for her that is enabling her to succeed.

Finally, I want to share a poem with you that was written by someone Bonnie held in high esteem; Wanda Burdick, a friend, a homeschooler pioneer and advocate and founder of Teenworks. Wanda shared this poem with me yesterday and I asked permission to share it with you. At the memorial service, we heard about the phrase Bonnie used frequently while teaching our kids: "Let's be a blessing...". Another phrase I was reminded of in Wanda's poem was "It's only by God's grace...". So I will end with the poem and update you after our R & R.

Love Steve (and Cassandra, Caleb & Callie)

Only By God’s Grace
Wanda Burdick

Bonnie I met many years ago,
I don’t think she ever had any foes.
She was a friend to everyone
And she worked until the task was done.
But when asked why? She simply stated,
“Only by God’s Grace.”

She devoted her life to others,
As a helper, listener, wife and mother.
I know she got tired and weary,
But she still worked in a furry.
And I asked why? She simply replied,
“Only by God’s Grace.”

I watched her do the menial jobs,
Like cleaning toilets, and wiping door knobs.
I used to think, she is so willing,
If only the world had two Bonnies, how thrilling.
I still asked her why she did this and she still said,
“Only by God’s Grace.”

One day I had lost a loved one,
She listened and said loosing one is no fun.
She understood and comforted me,
And helped me to look to Jesus and to see.
As she said we will all someday be there,
“Only By God’s Grace.”

One sad day Bonnie was diagnosed with cancer,
But she did not dismay, but looked for the answer.
So she could continue to be a wife and mother,
Her desire was to get better to serve others.
When I asked how she was doing, she humbly replied,
“Only by God’s Grace.”

Bonnie prayed she would suffer well,
Even though she knew she would say her farewells.
She became so concerned for her family
As she so loved Cassandra, Caleb and Callie
She asked me how do I prepare them?
I said, “Only by God’s Grace.”

Bonnie did all she could do,
To be there for them to see them through.
The good times and hard times of life,
For she wanted only to be Steven’s wife.
But she knew it was,
“Only by God’s Grace.”

On December 11, 2010, the death bell rang,
And Bonnie went with Jesus as the angels sang.
Bonnie woke up in to the arms of Jesus,
To be a part of heaven and its sweetness.
She said to Our Father,
“Thank you for your Grace.”

Bonnie will be missed and remembered by many,
And there is nothing that can help us to be ready,
To deal with the pain and loneliness,
To deal with missing Bonnie’s closeness.
Except: As Bonnie would say -
“Only by God’s grace.”

Bonnie was a good friend and example to all. This is a tribute to a Godly woman who was given to us by God’s Grace. So often I heard Bonnie use this term and these were the last words I heard from Bonnie. “Only By God’s Grace.”

Thank you Wanda!

Wednesday, December 15, 2010

December 15, 2010

As this long day draws to a close, I can’t help but reflect on how incredibly blessed we are as a family. We are so grateful for all of you contributing in different ways making this day, mixed with heartache and sorrow, one that was special and to be treasured for a long time.

Some of you were unable to attend Bonnie’s memorial service due to various reasons, but were still with us in spirit praying fervently that God would be glorified through the remembrance of how He used Bonnie for His will. Thank you for those prayers and for continued prayer for our family. Based on the number of comments shared following the service, this prayer was answered tenfold.

Those of you who could attend, thank you for being a part of our rejoicing and celebration of Bonnie’s life. Thank you for your encouraging words, offer of support and continued prayer.

Thank you to Trinity Church and all the many volunteers who donated of their time and talent to assist with coordinating everything from A/V, ushering, food preparation, and overall coordination. What a blessing it was to all of us to be able to spend more time with family and friends during this difficult time.

Today was the essence of who Bonnie was and how God challenged her and used her. Through the tears we had smiles in our hearts. God has healed Bonnie and that in and of itself is an answer to the prayers of thousands. You may say though, but God didn’t heal how we wanted Him to heal her. God is mysterious and unfathomable and we cannot even being to fully grasp His purpos in a situation like this, but we trust him that he knows best.

And now we move forward attempting to learn a new normal of life without mom. Bonnie will be missed, but the seeds she planted and the seedlings she has been nurturing in our kids have been watered by your prayers. If you are looking for a tangible answer to your prayers here is one. I know many of you, including myself; have been praying for the spiritual strength of our children. Back during the week of Thanksgiving, my mother brought to my attention that my 15 year old (Callie) had a blog. So like all responsible parents who don’t know their child has a blog, I searched for it and found it and was stunned by some of her posts I read.

As I read Callie’s blog, tears of joy were running down my face because of God’s mercy in answering our prayer that our kids were persevering throughout this trial and were willing to accept one of the most challenging emotionally painful events a teenager probably has to endure. With Callie’s permission, I have pasted one of her blog posts. I do this not as a proud father, but as evidence of answered prayer. The depth of thought in this post is nothing Bonnie or I can take credit for. As I said in the previous paragraph, seeds were planted, but were watered and fertilized with your prayers and the fruit of those prayers is one example from a November 12th blog entry from Callie’s site:

Friday, November 12, 2010
Recently, I had a friend ask me how I could stay a Christian and still love God, even through my circumstances. This came as a huge shock to me, especially from a Christian Homeschooler that would ask me this. I continued on to tell this friend that it's not my choice what circumstances come my way, and that it’s ALL up to God. The conversation continued on and went down a path that I didn't expect. Basically to sum up what went on without mentioning names, this friend said to me: "I just can't imagine how anyone could not be angry at God for making life so terrible..I can't even do it and my life isn't as half as bad as yours." I realized that this was the PERFECT opportunity for me to share one of the closest things to my heart.

I started to explain that God will never give us more than we can handle. Sure, it’s extremely hard having cancer in your family but that doesn't mean we just forget about God, put him in a drawer and only open it if life is going great. We have to take the good with the bad and THANK God constantly for whatever he is doing in our lives. It's for his ultimate good and purpose. I know sometimes a lot of people don't seem to understand this topic. I have found that you truly don't understand the idea of fully relying and trusting the Lord until you go through trials. Before any of our family trials happened, I used to always think "Oh I get the whole idea of relying on the Lord." But I didn't fully realize until my parents got cancer, how much God wants us to trust Him. It’s amazing to see. I've learned so much through this situation.

The other day I was reading this book by Elisabeth Elliot about suffering. One of my favorite quotes by her was this: "He is not all that we would ask for (if we were honest), but it is precisely when we do not have what we ask for, and only then, that we can clearly perceive His all-sufficiency. It is when the sea is moonless that the Lord has become my light." I have that quote taped on my mirror. It daily reminds me that at times we might want something more, but the only thing we really need is God and his all sufficient self.

The basic name to label this is Faith. If we don't have faith, we don't have God in our lives. If we don't trust him no matter what comes our way, we don't have God. He is the ULTIMATE way, truth and life. A really important Bible verse that puts faith into perspective for me is Matthew 17:20: "I tell you the truth, if you have faith as small as a mustard seed, you can say to this to this mountain: 'Move from here to there.' And it will move."

Basically to sum up this post, never stop trusting God, no matter what comes your way. He sustains you and holds you up through the hardest times. He is our ultimate hope, and King.

Posted by Callie Marie

Thank you for the many ways of expressing love to our family during this very difficult period in our lives. Today’s service was like a dissipating storm cloud with the bold rays of the sun shining brightly through. We will be forever grateful for your care and concern.


Steve, Cassandra, Caleb and Callie

Sunday, December 12, 2010

December 12, 2010

To all our family and friends as well as acquaintances who have found us on this blog,

Thank you again for the outpouring of love on our family during this difficult time. We are still numb and have many “reality sinking in” milestones ahead of us and have already confronted some head on like meeting with the funeral home, planning a service and coming back home with one less chair occupied at the table. We will have more of those as time for us here continues and appreciate all of your prayers for strength and endurance.

With that said, we have a few parting words. First of all, we have confirmed that the memorial service will indeed be held this Wednesday, December 15th at 11:00 a.m. at Trinity Church located at 3355 Dunckel Road in Lansing, with visiting family an hour prior to the service and lunch following. Over the course of the past year and a half, we have heard that there are people reading this blog who we have never met. We know Bonnie would have loved to meet you and to learn more about you. Bonnie never liked the focus to be on her, but we are planning to celebrate her life and glorify God on how He used Bonnie right up to the end of her physical life here. Even if you never met Bonnie and only know her through this blog, we would like to extend an invitation to you to attend this service.

Finally, as I sat down this morning to catch up on my daily Bible reading that I missed yesterday, how fitting it was that part of my scheduled reading included Revelation 7, particularly with an emphasis on verses 9 through 17 below:

After these things I looked, and behold, a great multitude which no one could count, from every nation and all tribes and peoples and tongues, standing before the throne and before the Lamb, clothed in white robes, and palm branches were in their hands; and they cry out with a loud voice, saying, "Salvation to our God who sits on the throne, and to the Lamb." And all the angels were standing around the throne and around the elders and the four living creatures; and they fell on their faces before the throne and worshiped God, saying, "Amen, blessing and glory and wisdom and thanksgiving and honor and power and might, be to our God forever and ever Amen."

Then one of the elders answered, saying to me, "These who are clothed in the white robes, who are they, and where have they come from?" I said to him, "My lord, you know." And he said to me, "These are the ones who come out of the great tribulation, and they have washed their robes and made them white in the blood of the Lamb."

"For this reason, they are before the throne of God; and they serve Him day and night in His temple; and He who sits on the throne will spread His tabernacle over them. "They will hunger no longer, nor thirst anymore; nor will the sun beat down on them, nor any heat; for the Lamb in the center of the throne will be their shepherd, and will guide them to springs of the water of life; and God will wipe every tear from their eyes."

Bonnie is with a multitude in heaven, has been made clean by the blood of the Lamb and she is without a doubt serving Him already and will have unlimited strength and energy to serve Him for all of eternity. The last year and a half she has experienced hunger, thirst, and after the transplant was always concerned about the sun beating down on her, be she now has the freshness coming from the springs of the water of life. I’m sure she’ll have some tears; tears of joy with the Savior, maybe tears for us, but the comfort and tenderness of God will gently wipe them all away.

We love you Bonnie and will miss you!

Steve, Cassandra, Caleb and Callie.

Saturday, December 11, 2010

December 11, 2010

Bonnie Opper (7/31/1962-12/11/2010)

This morning Bonnie’s journey here with us ended and started afresh with the Lord. After a year and a half of battling leukemia, her body gave in to a terrible infection that couldn’t feasibly be overcome. Central to all of the complications was the loss or rejection of the stem cell transplant she had a year ago. For some unexplainable reason, her graft stem cells were not present in her most recent bone marrow biopsy, thus the inability to produce white blood cells which were needed to fight the infection.

Normally in past blogs we took the time to explain in detail some of the medical aspects as well as the challenges Bonnie was dealing with. We no longer need to focus on that, but instead need to reflect on the positive impact Bonnie had on people around her.

Bonnie never put herself first; before me, the kids, family, friends or acquaintances. She would be the one eating a cold dinner after making sure our children were provided for. She would work all day teaching and then be correcting papers late at night and encouraging me to go to bed to get rest.

Bonnie never liked the attention to be on her. No matter the situation, whether she was having a good day, or bad day, sick or healthy, she would always brighten up when she encountered anyone. I remember one instant when she had just received her bone marrow transplant last year and had severe mucusitis pain in her mouth and was wrenching in pain and when the doctors came in she had a smile on her face and asked how they were doing. She didn’t just do that as a custom, but rather sincerely wanted to know how they were doing. She didn’t want her pain to be a burden on them. For the caregiver (me) it was difficult because I knew how much pain she was in, so I would quietly let the staff know how Bonnie’s personality was wired.

She left a huge impact on the doctors and nurses at both Sparrow Hospital and Karmanos. The nurses in ICU have been amazed at the number of staff (nurses, doctors, assistants, etc.) that have come over from Karmanos’ wing of the hospital to ICU to see Bonnie. They’ve said “she must have left quite an impression on the staff in the Bone Marrow Transplant unit!”

On the Friday after Thanksgiving, I came into Bonnie’s room at Sparrow Hospital early in the morning. She said she felt the sickest she has felt and said “I think I’m going to meet the Lord today”. Well, that day came and went and so did several more in between then and today. But today, she is meeting the Lord and I’m excited for her, yet grieving for us and praying that God will fill the void she has left here.

One thing Bonnie would want more than anything is to have you know that she is safely home with Christ and had a peace knowing that when this day came she would be with Him for eternity. The reason she was so sure is by the simple steps she took so many years ago of acknowledging to God that she was as sinner; born in a sinful state because of our fallen world; separated from a holy God because of her sin and unable to do anything, any good work in and of herself to satisfy a holy God’s wrath; knowing that it would take someone perfect to appease God’s wrath which Jesus did for her and by putting her faith in Christ, asking or inviting Him into her life, she knew her sins were forgiven and she would spend eternity with Him. Anyone who comes to God confessing their sin, putting their faith and trust in Christ Jesus, inviting Him into their heart, loving Him, and living their life for Him will certainly have the same assurance Bonnie was confident with.

“If we confess our sins, he is faithful and just to forgive us our sins and to cleanse us from all unrighteousness.” I John 1:9

So, as we draw this blog to a conclusion, my family and I cannot begin to express our gratitude for the outpouring of love and kindness that has been poured out upon us during this very difficult time. We are so grateful for each and every one of you and appreciate your prayers. We are planning a memorial service for Bonnie which is tentatively planned for 11:00 a.m. this Wednesday, December 15th at Trinity Church in Lansing. Once all arrangements have been confirmed we will do one last post of the date and time.

With love,

Steve, Cassandra, Caleb and Callie

Wednesday, December 8, 2010

December 8, 2010

Another day of medical education combined with wondering, waiting and watching as Bonnie continues to be fully sedated as the components of life support perform their job. As Bonnie rests in the ICU, the multiple IV meds fight a terrible infection that has been identified. For now she is stable, but in critical condition

The blood cultures have tested positive for an infection which is the same positive test from Bonnie's mouth secretions from a few days ago. It's good that the specific type of infection has been identified so the medical staff can treat it with appropriate regiment. Because Bonnie's immune system is either suppressed or non-existent, the infection became severe enough that it taxed her body and as a result the failing vital signs.

Combined with the infection was Bonnie's body's reaction to the infection called Sepsis, which is a potentially life-threatening condition the can injure the body tissues beyond the original infection. It can affect the function of vital organs temporarily or long term.

Because of the low blood pressure yesterday along with the sepsis, harsh antibiotics and other meds, Bonnie's kidneys are failing based on the limited amount of urine output and the level of creatine in her blood. There are times kidney failures can be reversed, but this is something yet to be determined.

On the positive side, the amount of oxygen has been somewhat reduced, which means the blood oxygen has improved a little, although Bonnie has a ways to go until consideration would be given to removing the breathing tube. In addition to the oxygen, ICU has been able to slowly reduce the volume of IV med used to sustain Bonnie's blood pressure to an acceptable level. She is far from being off the IVs, but it certainly is headed in the right direction.

Bonnie had another bone marrow biopsy today. The initial results show that no leukemia is present in the bone marrow. The balance of the results are supposed to be returned on Friday and the latest being Monday. It should give some indication as to whether Bonnie's body has rejected the stem cell transplant of the infection has destroyed the immune system or suppressed her immune system.

We are praying and hoping that the infection has only suppressed Bonnie's immune system. If that is the case, the hope is that her immune system might rebound, IF she can recover from the infection, the sepsis, and the damage that has occurred to her system and organs.

On behalf of our entire family, thank you again for your prayers, notes, cards, visits and overall support.

Steve and Bonnie

Tuesday, December 7, 2010

December 7, 2010

This morning as I was walking into the Bone Marrow Transplant unit at around 6:50 AM I sensed things weren't going well in Bonnie's room as I saw one of the RNs walking about 100 feet ahead of me carrying what looked like ice packs. As I arrived at the room and saw the attending night physician in the room with two other nurses I learned that the fever Bonnie had spiked to 101 last night had crept up over 103. In addition her blood pressure was very low (70s over 40s), blood oxygen low (81) and heart rate elevated (150ish). The team worked vigorously to improve Bonnie's vital signs but in a short period of time determined she needed to be immediately moved to ICU, where she is now.

To say she is on "life support" sounds so terminal, but in reality, it is IV meds that are artificially keeping her blood pressure at acceptable levels and her heart rate moderate. The ICU team had to insert a breathing tube (intubation) to get Bonnie's blood oxygen at or near acceptable levels. So tonight Bonnie rests under heavy sedation and pain meds, in addition to the other meds, including antibiotics and her ongoing meds since the bone marrow transplant.

Chest xrays show some lung infiltrate which could be a number of things. Blood cultures from this morning have returned positive for an infection that is being narrowed down currently and may be determined by tomorrow morning.

She may have an infection in her lungs, it may be in her blood, it may be both and what is currently being analyzed. Once the infection has been identified, the doctors feel the status is reverseable, however there may be damage to her lungs or possibly other organs, due to a number of things, including the low blood pressure and meds being pumped through her.

Key in all of this is Bonnie's immune system or lack thereof. In normal situations the doctors believe this is reverseable, but the variable in this case is that Bonnie doesn't have a normal immune system, but rather a compromised system. As of this morning her white blood cells had dropped to .1 or 100 (as a refresher 4000-12,000 is considered normal range).

The prayer is that her bone marrow will start to produce new white blood cells and that her numbers will come up to an acceptable level. Bonnie knew the best place for her was Karmanos, but once we arrived over a week ago, she shared with me a concern of her failing and being stuck in Detroit, 90 miles away from home. For now, her concern is being realized, as she lies in ICU unaware of her situation.

Tomorrow Karmanos plans to do another bone marrow biopsy. If you have followed this blog in the past you are aware of the anxiousness Bonnie has in anticipation of this procedure. Because she is under heavy sedation, she has no clue this is going to happen and won't be awake during the actual procedure to care. Hopefully the biopsy will give the BMT doctors a clue as to why Bonnie has been neutropenic (no WBCs) since the Wednesday prior to Thanksgiving.

At this stage, there isn't any indication how long she will be in ICU. I was told it could be days or weeks, depending on how she responds to treatment. So, please continue to pray for God's will. Obviously our desire is for the reversing of her current status so she can return to Lansing.

Thank you for your faithfulness in keeping us in your prayers.

Love, Steve (and Bonnie too!)

Sunday, December 5, 2010

December 5, 2010

For those of you who have at one time or another planted a vegetable garden, you know what it is like to wait for the seeds to sprout, stems to grow and the leaves to unfold with the hope of blossoms forming, being pollinated and growing into something to harvest weeks later. Sometimes seeds are planted too deep and take longer to poke through the surface, sometimes the seeds sprout but have a deficiency or disease, some grow into plants with blossoms and no fruit and others produce a harvest that is tenfold.

What does a vegetable garden have to do with an update on Bonnie? As one day becomes night and another day rolls around, the sitting, waiting and wondering about positive results are like watching the surface of the soil waiting for a seedling to poke through wondering if it will be one that grows or withers. Thus far the past two weeks have produced few results.

From a positive perspective, the fevers are under control with the last one being over 48 hours ago. Whatever her body was trying to fight has been neutralized by 5 different heavy duty antibiotics. Another positive is Bonnie’s will to fight. She has forced herself to get out of bed to walk ten laps around the floor yesterday and eleven today. The energy may be due in part to the temporary steroid she received four doses of Friday and Saturday.

The four doses of steroids were given to Bonnie with the hope that it would be like a bomb to attack the Graft Versus Host Disease ravaging through her mouth. Unfortunately the steroids did not prove to be an effective treatment, as there has not been any improvement or relief in the slightest.

Her blood counts remain low and the collective wisdom is that until her white blood cell count increases the sores will persist. So while we wait to see if and when the counts come up, Bonnie is left with various concoctions of ointments and rinses to find temporary relief combined with the stronger IV pain meds that have been causing nausea. We thought we found an anti-nausea solution yesterday without the drugged up effect, but later found that many times a bad headache accompanies its use. So it is a vicious circle with no immediate light at the end of the tunnel.

We wait and try to focus on God’s faithfulness. The verse that we are claiming and is written on the grease board in our room is Isaiah 40:31:

“Yet those who wait for the Lord will gain new strength, they will mount up with wings like eagles, they will run and not get tired, they will walk and not become weary.”

Please pray Isaiah 40:31 for us. We are so grateful for your prayers not only for Bonnie and me, but also for our kids. In addition to how you’ve been praying we do have a special prayer request for Cassandra who is away at college and to a certain extent feeling all alone. She has finals coming up over the next couple of weeks which will require her undivided attention to accomplish the goals she has set for herself to maintain her academic scholarship. She has the ability to compartmentalize a little, but with what is going on in our family’s life, it’s a challenge for her to forge ahead with the focus she needs to succeed. Pray that she will be able to focus clearly on her studies and that she would not feel any guilt about being away actively involved with school.

Thank you!

Steve & Bonnie

Friday, December 3, 2010

December 3, 2010

As Bonnie rests in the quietness of the room with the IV pumps whining, clicking and pumping away, I thought I provide an update on Bonnie as it has been a couple of days. There has been much change thus far in her physical condition. She still has the horrendous mouth sores from the Graft vs. Host Disease, swelling in the cheeks from the sores, skin GVHD, no white blood cells to speak of, and other key blood components that decline and then boosted by infusions.

To counter the pain we are trying to manage and tweak dosages of dilaudid so it doesn’t cause nausea on top of everything else. Yesterday the doctors prescribed a Patient Controlled Anesthetic (PAC) device so Bonnie can push a button for pain med as needed, up to four times each hour. Even with the minimal amount of meds, it is still creating nausea, so along with the paid med she reluctantly takes Ativan as an anti-nausea med. Both the pain med and Ativan combined cause Bonnie to be groggy and sleep a lot, which is a frustration for her, but the lesser of two evils with the intense pain she is experiencing.

One of the sores on the inside of her cheek is hitting the nerve that runs into the molars and up into her ear, so not only is the pain local, it also travels through the nerve that runs along the jaw and into the ear. Today the doctors are starting a two day plan to see if they can alleviate some of the pain and settle down the GVHD mouth sores, by using a low dose steroid, Decadron. Putting Bonnie back on the normal steroid she has been on since the transplant (Medrol) would stir up leukemic activity, and could possibly reverse the positive effects the radiation had on the mass in her breast. So, they are giving her four doses total of Decadron between today and tomorrow.

The hope is that the Decadron will be like a small bomb attacking the GVHD in her mouth neutralizing it for a couple of days until a heavier dose of her immune suppressant medication can build up in her system to counter the use of the white blood cells that are traveling to these sores wreaking havoc in her mouth. The thought is that the few WBCs she has are all going naturally to attack this area with the GVHD, which makes matters worse. If the low dose steroid can slap down the GVHD, the WBCs won’t be used up so quickly, allowing her counts to rise.

This is the short term remedy and no guarantee it will be successful, but that is the plan for now. Long term there is still the issue of why the leukemia came back with textbook GVHD. Questions that remain and can’t be answered at this point include, did the graft of the donor stem cells fail (transplant rejection) after a year or is there a viral infection that has yet to be detected. All blood tests have come back negative. GVHD can cause WBCs to decline, but Karmanos also feels that the amount of radiation needed for the treatment of the mass may have contributed to the reduction as well. Has Karmanos seen stem cell rejection a year later? Yes, but rarer. At this point is that there assessment? No.

So, we wait. It’s a trial and error at this point or maybe better referred to as trial and elimination. There isn’t a “step by step” clinical study that says “here’s how you address this issue.” It’s looking at every possibility and eliminating and narrowing down. We know we are in the right place and feel confident that Bonnie is getting the best care possible.

In some respects, the bone marrow transplant in 2009 was easier, as there were benchmarks or milestones that a loose schedule adhered to. In this case, it is all about the unknown. So we have to put the “unknown” in God’s hands and rest in the fact that he knows the outcome. He knows what is going to happen the next hour, the next day, the next week and beyond.

Ours and your prayers ARE being answered. Some may not be the answer WE want or desire because WE don’t possess God’s wisdom to fully see the picture from His vantage point in infinite dimensions compared to how he created us in finite dimensions. So how are the prayers being answered? Our faith and trust in Christ has not wavered throughout this trial. It has been strengthened. The peace that God has poured out upon us has been abundant and overwhelming which provides us the nourishment for endurance. Our patience in “waiting on the Lord” has not wavered even with the day to day waiting and wondering what is next for Bonnie.

“….for He views the ends of the earth and sees everything under the heavens.” Job 28:23-24

Thank you for your continued prayers.

Steve & Bonnie

Tuesday, November 30, 2010

November 30, 2010

This past Sunday, Bonnie and I watched a pastor teach on accountability as we sat in her hospital room at Sparrow Hospital. Because of your faithfulness in praying for Bonnie and our family over these many months, we need to be accountable to you on keeping you up to date on Bonnie's status and the reason for the frequent updates.

Today Bonnie was transported via ambulance (no sirens or flashers) from Sparrow Hospital to Karmanos Cancer Center where she had her bone marrow transplant in October 2009. Yesterday most of the blood tests for viral infections we have been waiting for from Mayo Clinic came back negative. Deductive reasoning by the team of physicians is that everything (fevers, no white blood cells, mouth sores, etc.) Bonnie is dealing with is most likely Graft vs Host Disease. Sparrow Hospital doesn't have the expertise in providing the in-depth care required for this so they requested a transfer to Karmanos.

Nothing has really improved since a week ago Monday with the exception of the fever is now more or less low grade and for now has only been spiking into the mid-100 degree range, although tonight it has climbed to 101.5 degrees. She continues to endure extreme pain in her mouth, but reluctant to accept pain medications because of the side of effects. It isn't until the pain is almost unbearable that she succumbs to the realization that she needs the masking for relief. Please pray that she might be more accepting of these meds so her body can use the energy to fight the GVHD or whatever else is going on as opposed to the energy being spent on fighting pain.

The transfer from Sparrow to Karmanos today was seamless. More times than not, scheduled activity at the hospital doesn't usually occur as quick as one would want. The idea of transferring was introduced at 9:30 this morning and by 2:30 this afternoon the transport team was rolling Bonnie out of Sparrow. We arrived at Karmanos at 4:00 and by 4:45 the Chair and head physician of the BMT unit and Bonnie's Nurse Practitioner were already examining Bonnie and charting out an initial course of action.

They are running some new tests as well as redoing some of the tests Sparrow did this past week. In addition they are going to insert a PICC line (central catheter for infusing meds and blood draws). By doing so they can start Bonnie on a TPN (nutrition IV) so she can get the necessary nutrients that may have been missing from the smoothie shakes she has been drinking the past three weeks.

We know Bonnie is getting the best care and treatment here at Karmanos, but she is ultimately in God's hands. As more information becomes available we will certainly share it with. Thank-you for your faithfulness in praying for us.

Steve & Bonnie

Friday, November 26, 2010

Good Evening,

Just a quick update on Bonnie. Over the past couple of days she has been pumped with antibiotics and antifungal meds along with all the meds she has been taking since her bone marrow biopsy. Throughout the day she typically has two IVs going at once with various fluids being pumped into her along with the meds.

She continues to have fevers, but the spikes are not as high as they were earlier in the week. Tonight I took her temperature just before leaving and it had spiked at 100.1 degrees, which almost seems normal compared to the 103 and 104 degrees she was hitting.

She is still in quite a bit of pain due to the mouth sores. Today she was more willing to accept dilaudid for pain (I was told today that dilaudid is 5 times stronger than morphine or maybe more concentrated). Unfortunately after the second small dose, she experienced nausea and vomiting a couple of times making her a little apprehensive in taking more later this evening. The pain tonight was probably more severe than she has had because she was willing to have more dilaudid pushed through her IV regardless of the nausea. A little milk first followed by the nurse pushing it slowly seemed to help, although I left 30 minutes after.

Her blood labs continue to be the same without improvement. Her white blood cell count remains non existant, platelets lower than normal and hemoglobin dropping again, requiring another blood transfusion this afternoon. Other items in her comprehensive blood panel are out of normal ranges as well.

So, while Bonnie continues to endure each minute of each hour of each day with all the IVs, pain, nausea, we wait for lab results of tests to determine what she is dealing with, whether a virus, infection or possible, but very rare, a breakdown in the grafting of the stem cells that grafted over a year ago. Most likely it appears to be a virus which her blood has an antibody of a virus test positive. The complication is that the particular virus and how it reacts with a bone marrow transplant and graft host disease. This is something Sparrow Hospital doesn't have expertise in so they have sent biopsy and blood samples to Karmanos for their own testing to determine the best course for treatment, if any. Return of results are slower due to the Thanksgiving holiday weekend.

Please pray that the time will pass quickly and for Bonnie to have both short and long term relief of the pain and suffering she is enduring. Thank you for all the cards, notes, emails, and texts. Your prayers are the most important aspect of help during this time and we are grateful for each and everyone of you.

Steve (& Bonnie)

Wednesday, November 24, 2010

November 24, 2010

Overwhelmed is the only word that comes to mind as I sit here and ponder the past 24 hours. Overwhelmed is the same word that comes to mind thinking about the incredible amount of support you have shown us through all of your prayers. Thank you.

With that said, we are happy to report that Bonnie has been moved out of ICU. It was a 24 hour stay that seemed more like a 72 hour stay. Although it was nice to have a 1 to 1, nurse to patient ratio, it was not a pleasant visit for Bonnie. Her vital signs are much better and more consistent and after many blood draws, the doctors determined she could be sent back to her familiar confines of 5 West.

Bonnie is resting/sleeping now after being awake most of the night running various test, trying to breathe through various oxygen masks and poked enough times to feel like a pin cushion ten times over. So in the quietness of her room, I thought it was important to let all of you know that she is out of ICU.

Although she is out of ICU, she is not out of the woods, unfortunately. The pathology report of the bone marrow biospy from yesterday is still clear of leukemia blasts, but she still has a recurrence of the leukemia in her body. Sparrow is sending bone marrow samples to Karmanos for their review and testing.

Most likely, Bonnie is probably dealing with a virus or infection that is depleting her white blood cells trying to fight the virus. For some reason the bone marrow isn't keeping up making new cells. Because there is not sign of the leukemia in her bone marrow, the doctors at both Sparrow and Karmanos have agreed that Bonnie should be given Neupogen injections to stimulate the bone marrow to produce new white blood cells. Originally there was concern that this could also stimulate leukemic activity, but that concern was eliminated to a certain degree by the results of the biopsy.

She is still receiving strong antibiotics and antifungals as they continue to determine what is going on. Her mouth sores are bad, as I've previously mentioned. Every nurse that has looked at them have made comments that they have never seen sores like these. It took a lot of convincing by nursing staff, doctors and family for Bonnie to agree to receiving IV pain meds today. Her pain tolerance (or stubborness in wanting to keep a clear head) is incredibly high. It wasn't until she couldn't put her lips on a cup containing her protein smoothie because of the pain did she agree to a small amount of paid meds.

At this point we don't know how much longer she will be here, but we do know that we will celebrate Thanksgiving on 5 West. We are thankful for the wonderful caregivers who have become like extended family, we are thankful for you and most importantly we are thankful to God who is in control of all things including those things that are difficult and hard to understand.

Enter His gates with thanksgiving
And His courts with praise
Give thanks to Him, bless His name.

Psalm 100:4

Happy Thanksgiving,

Steve & Bonnie

Tuesday, November 23, 2010

November 23, 2010

Today has been one of the longer days we have experienced since this journey has started. Late this afternoon we taken back a little when we learned that the doctors wanted to move Bonnie from her comfortable familiar location on Sparrow Hospital’s 5 West tower (where we know all the nursing and management staff and they know Bonnie) to the Intensive Care Unit.

Bonnie’s fever spiked back up to 101 degrees last night and then as the early morning hours rolled around her vital signs started to be a little off. Her heart rate was/is elevated, blood pressure low and oxygen level in the blood low. They started her on oxygen around 6:00 this morning and she continues to receive it tonight. Her temperature was closer to normal this morning and at an acceptable level for her to get her 6th bone marrow biopsy. Initial pathology results should be back tomorrow.

Throughout the day her vital signs continued to be up and down so the doctors made the decision that she should be more closely monitored and thus the precautionary measure of relocating her to ICU. Staying on 5 West would have been 1 nurse to 5 patient ratio and tonight in ICU it is 1 nurse with Bonnie.

Needless to say it was a little unsettling for all of us as we moved Bonnie to an older part of the hospital in an area that is for the most part locked down from too much activity. Only immediate family can visit, limited to two at any given time, no cell phones and a lot of monitors, beeping, IVs, and nursing attention. The entire scene and disruption has created additional anxiety for Bonnie.

The fever is very persistent and for awhile was back up in the high 101 range, but finally got within range for another blood transfusion, as her hemoglobin has dropped down again and may be contributing to her high heart rate, low blood pressure and low blood oxygen. The labs drawn tonight showed her white blood cells dropping down to 180.

They have drawn several blood cultures to see what infection and/or fungal is contributing to the depletion of her white blood cells. Tonight they gave her a second IV (which the selected vein to use was very painful accessing), so they could run additional products simultaneously.

For several hours they had a large oxygen mask with an inflatable bag that was strapped to her head to increase the amount of oxygen. The corners of the mask cut across her jaw and put pressure right on the areas where she has a couple of the more severe mouth sores. Meanwhile she was having difficulty breathing through her nose as the mask pulled her mouth open, drying it out. Bottom line is, a long night ahead is pending. I pleaded with the nurse to try just the nose oxygen hose before leaving and thankful that proved to be adequate in keeping her oxygen at an acceptable level. This change seemed to calm her down a little, along with no initial signs of any allergic reaction to a new anti-fungal med being infused.

I know through our network of friends that word would get out that Bonnie was moved to the ICU. We appreciate all the care and concern on Bonnie’s behalf, and want you to know the specific words Bonnie’s doctor said, “we want to move Bonnie to the ICU as a precautionary measure to closely monitor what is going on with her vitals.”

I sound like a broken record, but specific ways to pray include Bonnie’s comfort and peace in the midst of a new environment and uncertainties that lie ahead, wisdom for the medical team to determine what specifically is going on, understanding for the kids, and I guess stamina for me (Steve). Thank you!

Steve and Bonnie

Monday, November 22, 2010

November 22, 2010

It's been a long day, but feel I should update you all on Bonnie's situation. Today she was admitted to the hospital as she woke up this morning with a temperature of 104 degrees. In addition she had GI tract issues (aka: diarrhea)this morning which is something she hasn't dealt with since her 58 day marathon in the hospital at the onset of the leukemia in 2009.

Her temperature stayed between 103 and 104 degrees for most of the day and physically took a toll on Bonnie. Between the combination of prayers mixed with ice packs around her body and heavy duty antibiotics her fever broke this evening and when I left the hospital at 11:00 tonight, her temperature was 98.4 degrees.

She is still having some GI issues, so that remains a concern as this could be Graft vs Host Disease flaring up where we don't want it to. It could also be something related to the fever. Key to this is the GI tract being replenished with new white blood cells, which is something Bonnie currently does not have which is the million dollar question...why did her white blood cell count drop down next to nothing?

The most logical theory from Bonnie's brother is that her body is fighting an infection of some sort and the white blood cells she has have been used up in attacking the infection and because she has a compromised bone marrow system (due to the transplant), her bone marrow can't keep up making new white blood cells to replace the ones fighting the infection.

Unfortunately with all of this, it is requiring another bone marrow biopsy tomorrow. Something Bonnie said she would never have done again. On the plus side of things, as an "inpatient" they can give her all kinds of meds to help her forget the procedure and be happy the doctors came to visit.

You can pray that she won't be anxious leading up to the procedure (we are unsure of the time at this point) and that the pathology might be able to identify what is going on with her system at this point.

Thanks for your continued interest and care.

Steve (and Bonnie)

Sunday, November 21, 2010

November 21, 2010

Just a quick update on Bonnie since the last post on Thursday November 18th. This past Friday, we were able to get into the hospital for a blood transfusion for the purpose of increasing Bonnie’s hemoglobin to give her some needed energy. Two units of blood take almost an entire day to transfuse, however Bonnie had energy within an hour of the first unit. It really was amazing as her color changed and she wasn’t sleepy, even with the pretreatment of Benadryl and Tylenol.

We thought this might give her the boost and jump start she needed and additional strength to endure the sores in her mouth and under her tongue. The multiple canker type sores under her tongue are equivalent in size to a large kidney bean and inside her cheeks similar in size to a quarter. Along with the sores on the inside of her lips is quite a bit of swelling. All of this is attributable to the reduction of the steroids and immune suppressant meds to increase the graft versus host disease to fight the leukemia due.

We just arrived home from the hospital where they did additional blood labs and met with the doctors in radiation therapy. Bonnie’s white blood cell (WBC) count has fallen to 600 (again, normal range is 4,000 to 12,000) and the neutrophils (the WBCs that fight infection) are 10 (normal being 2,000 to 10,000).

So for now, Bonnie is extremely immune compromised. We don’t know why her numbers have fallen. Radiation therapy says that the type of radiation she is receiving would not cause the WBC number to go down like it has. Bonnie’s BMT doctors were leaning more towards radiation causing it, so for now we wait and see.

We did find some leftover magic mouthwash from when Bonnie received her BMT as that process also has mouth sores of a different type. The mouthwash is giving her temporary relief for 25 or 30 minutes, but that doesn’t help during the night for sleep. Thanks for praying. Please continue to pray that the WBCs will increase on their own, that she can get much needed rest and have healing in her mouth.

I’m sure many of you know or have memorized the following verse from the book of James 1:2-4:

“Count it all joy, my brothers, when you meet trials of various kinds, for you know that the testing of your faith produces steadfastness. And let steadfastness have its full effect, that you may be perfect and complete, lacking in nothing.”

Pray that we will have joy in the midst of this trial, that our faith will be strengthened, and that we will persevere to the end. We know Bonnie will at some point be made “perfect and lacking in nothing” in God’s timing, whenever He decides. Thank you for your love and support.

Steve and Bonnie

Thursday, November 18, 2010

November 18, 2010

It can’t be said enough, thank you again for your prayers and interest in Bonnie’s condition. We continue to labor over future decisions on what to do, although if you were to ask Bonnie today, she wouldn’t do another bone marrow transplant. Any final decisions are a few weeks away, but she is more than convinced that she doesn’t have the strength to go through it again. I don’t blame her, nor do the kids, if she chooses not to do so, as she has been through a war the past year and a half.

In the past few days her physical condition has declined a little. We are not sure how much of the fatigue is from the radiation or from something else. Her mouth sores continue to prohibit her from eating solid food, so her diet consists of protein shakes. She had blood work done yesterday and the results are a little concerning. Her hemoglobin continues to decline so the doctors have given orders for two units of red blood to be infused tomorrow (Friday). This is a 4 to 6 hour process and always carries the risk of allergic reaction, so please pray that the process will be without incident. Hopefully this will increase the hemoglobin and give Bonnie some much needed energy.

Equally concerning is the White Blood Cell (WBC) count which has fallen to 900 (normal range is 4,000 to 12,000). Of the 900 WBCs, only 360 are neutrophils, the important WBCs that fight infection. Normal ranges are 65% to 80% of the WBCs being neutrophils and Bonnie is only at 40%, making her neutropenic. The last time she was neutropenic was immediately following the bone marrow transplant in October 2009. We don’t have a good answer at this point why this has occurred, as in the past it always occurred following chemotherapy. If the leukemia were flaring back up in her bone marrow and peripheral blood, her WBC count would be quickly increasing with blast cells. The problem with being neutropenic, in addition to the susceptibility of infection, is the temporary postponing of her final 5 radiation treatments. It’s radiation therapy policy to suspend radiation treatments when a patient is neutropenic.

On the flip side, the doctors do not want to give Bonnie neupogen, which is an injection to stimulate the bone marrow to produce more WBCs, as they don’t want to stimulate any existing leukemic activity. So, we wait it out to see if the numbers come up and improve and most likely she will have another blood draw on Sunday.

Tomorrow night (Friday) is a special evening out that our family has celebrated with another family for over 15 years; dinner, followed by Silver Bells in the City and the lighting of the Christmas tree at the State Capitol. Bonnie and I missed it last year while we were living in Detroit after the bone marrow transplant. We were looking forward to it this year, with Cassandra coming home from college, so we could all be together. With Bonnie’s condition it doesn’t look as though she will be able to go, which is a little discouraging and disappointing to all of us. Please continue to pray that she would experience God’s peace, would regain her strength and that her WBC count would come up to normal levels. Thank-you!

Steve and Bonnie

Friday, November 12, 2010

November 12, 2010

Greetings. Today Bonnie had a regularly scheduled visit to the Bone Marrow Transplant unit at Karmanos. The news was not what we wanted to hear, however we do feel it important to update this blog because of your faithfulness in praying for Bonnie and the rest of our family over the past year and a half. We are at a fork in the road with a decision pending on the direction to turn, knowing that regardless of the decision, the long range outlook or prognosis of either direction is laden with challenges.

The good news is that Bonnie has completed twelve of twenty radiation treatments and the leukemia mass in her breast is shrinking. The radiation is now starting to create additional fatigue as well as loss in appetite, but that was to be expected. She will complete radiation on the Wednesday before Thanksgiving which addresses the immediate need, but today’s visit at the clinic was in part to discuss the future course Bonnie should take for long term treatment.

We learned today that the chance of the leukemia recurring is 100% and that this mass in her breast is not a single incidence, but just the first recurrence. Because of this, the doctors at the BMT clinic are recommending another bone marrow transplant using a different donor. What this would involve would be another round of chemo for a week with the objective to kill off as much of the leukemia as possible, followed by surgery to implant a new central vein line catheter, another week of chemo to eliminate the new bone marrow she has developed, concluded with the stem cell transplant. What we know about second transplants is they are much harder on the body and the percentages of success are less than a first transplant. If you have followed this blog leading up to Bonnie’s first transplant, you may remember that we were told that even with a transplant there was a 50% chance the leukemia would recur in the first five years; of course Bonnie’s recurring within the first year. With a second transplant, the statistics show that there is a greater chance of recurrence in the first five years. Of course what was not stated above, are the entire issues post transplant that Bonnie has dealt with for over a year now from the first transplant. She is tired, has a mouth and throat full of sores, can’t shake colds and other illness, continues to take multiple pills several times each day and has to be mindful of all the dos and don’ts. She is weary (we all are weary) and to think about going through all this again with the potential long term outcome having poorer odds than the initial transplant, it is overwhelming.

The alternative is to not do another transplant. The doctors said if that was the decision that they would change up some of the medications and when the leukemia surfaced they would treat it with chemo to settle it down. This would be the process each time the leukemia recurs, however it will get to the point where the chemo will not work anymore and at that juncture their focus would be on Bonnie’s comfort.

In the interim, the BMT doctors are initiating the process for a second transplant; insurance approvals and donor identified. This process will take several weeks, so no decisions will need to be made until this occurs. So during this window is where Bonnie and the rest of us will pray about and evaluate the direction to go. Please pray for wisdom, clarity and discernment, as well as peace, as we struggle with this decision. We trust, take rest in, and thoroughly believe God is in control of all circumstances and situations, regardless of the pain, suffering and heartache. One of the kids said “it isn’t fair”. I can only hold fast to the fact that life isn’t fair and take comfort in the fact that throughout scripture there are occasions to look at that “weren’t fair”. In the book of Genesis, Joseph’s brothers sold him into slavery and then he was falsely accused by his master’s wife and thrown in jail. Was that “fair”, maybe not, but God had a greater purpose that unfolds later in his Word. In the book of Exodus, when Moses sent out twelve spies to scope out the Promised Land, only two of the twelve, Caleb and Joshua, had the faith and confidence in God to take the land. Yet all of Israel sided with the other ten spies and were afraid and lacked faith. The result was God’s discipline of 40 years wandering in the desert waiting for a generation to die off. Was that “fair” to Caleb and Joshua that they had to wait 40 years to enter the land? Maybe, maybe not, but God kept his word and Caleb and Joshua endured and were strategically used by God in conquering the Promised Land. Finally, was it fair that Jesus endured the abuse, scourging and crucifixion as an innocent man? It was the ultimate sacrifice for our benefit to appease God’s wrath because of our sin. All we have to do is put our faith and trust in Him and seek his forgiveness. By doing so assures us eternity with Him and then all those “life isn’t fair” moments become a little easier to endure.

Please pray that we will persevere and endure this trial and make sound decisions. Thank you for your ongoing support.

Steve and Bonnie

Monday, October 25, 2010

October 25, 2010

Just a quick update on the latest with Bonnie. She had a consultation appointment today with the radiologist to discuss radiation therapy on the mass in her breast. The mass was approximately 4cm x 4cm a week ago and is now 5.8cm x 8cm so there is an additional level of urgency in commencing with the radiation. She is scheduled for simulation setup tomorrow which simply is establishing her position on the table and the coordinates and measurements for the targeted radiation. The data is then transferred to the computer controls of the actual radiation machinery. (A personal note to Marty, our friend who is the chief physicist in the radiology department: I’m sorry for my simplistic description of the simulation and setup when in reality it is a very precise and complicated procedure and calibration of highly specialized equipment!)

Radiation will actually start on Thursday this week. The duration is uncertain at this stage; however the doctor did indicate that something like this could be 5 times per week for 6 weeks.

We have yet to receive any additional information on the more detailed aspects of the bone marrow biopsy from last week. We are hopeful for more positive news on these test to be shared at Bonnie’s Karmanos Clinic visit this Wednesday. In the meantime we are back to “one day at a time” mode, which is tiring in and of itself, but in the greater scheme of things, more useful for Bonnie’s and our endurance at this point in time. Thanks for the prayers!

Steve and Bonnie

Friday, October 22, 2010

October 22, 2010

Thanks again for you interest and care for Bonnie and her prognosis. Yesterday we received the initial results for the bone marrow biopsy showing it to be clear of the leukemia. Obviously this is good and an answer to prayer, however there are still results pending that involve more thorough tests that should be returned later next week.

Based on this information, the direction our team of doctors is recommending for treatment of the mass is radiation or surgery, either being equally effective, but the preference for radiation. With that said, Bonnie is scheduled Monday for a consultation with the radiation department at Sparrow hospital and hopefully followed by the set up simulation on Tuesday. This department is very busy so it is difficult to schedule something quickly; however we are very fortunate to have a good friend who works in this area which has helped in moving Bonnie up the list. Moving quickly is important as the mass continues to grow and there is an underlying concern that the immature white blood cells (leukemia) in the mass could possibly find their way into Bonnie’s blood stream which would be a major setback. So please pray that the radiation can commence as soon as mid to late next week.

We are back to taking it one day at a time, but once the mass has been dealt with, the Bone Marrow Transplant Clinic at Karmanos needs to address a different issue: why was there a recurrence of the leukemia when everything was pretty much “textbook” with Bonnie’s transplant. Meaning, the transplant went as it was suppose to and she has had a level of Graft vs Host Disease (GVHD) since the transplant that should have kept any remaining leukemia cells from recurring. The doctors have speculated or conjectured that Bonnie may need another bone marrow transplant from a different donor. At this point, let’s just say that it is within the realm of possibility, but difficult to contemplate going through that again.

So, the easiest thing to do is to put all the fears and anxious thoughts in God’s hands and trust that He continues to have a plan that is beyond our ability to understand. Do we still have our moments? Yes, but your prayers continue to lift us up to God who engulfs us in His peace.

“In peace I will both lie down and sleep, for You alone, O LORD, make me to dwell in safety.” Psalm 4:8

All glory, honor and praise belong to God and Him alone. As additional information becomes available we will share it with you.

Steve and Bonnie

Tuesday, October 19, 2010

October 19, 2010

Thank you for your prayers and notes of encouragement today. The bone marrow biopsy Bonnie endured today was painful, but necessary. She did well and should have got a sheet full of stickers to take home, but instead all she got was a very sore back side that is still tender to sit or lay on. The results of the biopsy will start to trickle in on Thursday or Friday of this week with more in-depth analyses next week and will serve as the physicians’ guide to treatment.

The lump/mass Bonnie found last week is called myeloid sarcoma which is a tumor made up of useless white blood cells called myeloblasts. Previously we described that a key element of the bone marrow transplant is Graft vs Host Disease (GVHD). A mild ongoing case of GVHD helps to keep the remaining rogue leukemia cells that are floating around in Bonnie’s body more or less contained to prohibit relapses in the leukemia. A simple explanation would be that one of these (maybe more) leukemia cells escaped through the GVHD gatekeeper and found its way to the breast tissue and the immature white blood cells formed the lump/mass.

The hope is that this is a single “localized” mass and nothing further. If that is the case, the best case scenario is radiation of the area containing the mass with the potential of a mastectomy, subject to concurrence of our team of physicians. It is our understanding that it’s a little rare for myeloid sarcoma to appear in the breast tissue, so at this point we’re not sure what the clinical treatment/trials recommend.

For now the doctors have reduced the amount of steroids and immune suppressants Bonnie is taking to allow the GVHD to flair up more than its current state. If there is something brewing in her bone marrow, an increase in GVHD may aid in settling things down. The challenge is keeping the GVHD manageable and not getting out of control. Manageable means potentially more skin rashes, mouth sores, dry mouth/eyes, fingernails deformed/cracking, etc. Out of control would be GVHD in Bonnie’s liver and/or GI tract.

Once we have a clearer picture of what lies ahead we will update this blog. So in the interim, please specifically pray that the results of the bone marrow biopsy are good, that the lump is indeed localized just to the breast tissue, that Bonnie can endure the added discomfort of the increased GVHD, that the GVHD will not get out of control, that Bonnie doesn’t experience any additional fatigue from the steroid reduction, that we will continue to be at peace through this ongoing battle and that God will continue to give us emotional strength. Thanks again for your care and concern.

Steve & Bonnie

Monday, October 18, 2010

October 18, 2010

Well, it’s been a long time since we have updated our blog because no news has been good news. Unfortunately the journey for Bonnie has veered off the course we’ve been traveling since her bone marrow transplant a year ago October 9th. Last week Bonnie discovered a sizable lump on the side of her breast and Wednesday was a day of ultrasounds/mammograms and doctor examination followed by a biopsy of the breast tissue. The pathology report of the biopsy of the mass in her breast just came back today and it shows a relapse of the leukemia that presents itself in the soft tissues as opposed to the blood.

At this point we don’t know much more than that. We do know that Bonnie is scheduled for a bone marrow biopsy at 9:00 tomorrow morning at Karmanos with the resulting pathology report due back hopefully by the end of the week. At that point the doctors will have a better picture of what we are dealing with and how best to treat this new development. The bone marrow biopsy is not a pleasant procedure so please pray that Bonnie will not be anxious thinking about it as we drive 1½ hours down to Karmanos.

For the past six months, Bonnie’s physical condition has been in line where the doctors expected her to be. She has had monthly visits to Karmanos for blood work and examinations. Besides white blood cells and platelets, the doctors have kept a close eye on her liver and kidney numbers. As her blood work fluctuated and the Graft Versus Host Disease (GVHD) presented itself in irritating, but necessary ways, such as sores in the mouth, skin rashes, dry mouth, etc., the doctors have tweaked and modified Bonnie’s medications to balance the suppression of her immune system with the containment of the GVHD. The ideal situation following a bone marrow transplant is to have some minor GVHD to ward off and close the door on any rogue leukemia cells floating around, so the doctors have seen it from a positive perspective that Bonnie has had some GVHD.

We were told at the time of the transplant that there was a 50% chance the leukemia could come back in the first 5 years, yet this new development was still an unwelcome surprise, considering Bonnie just had a good clinic visit on October 8th. As we learn more and have information to share we will continue to pass along through this blog.

In the event you were wondering about my (Steve’s) status, I still remain in remission and just recently had my “infusaport” removed, which was a relief, after carrying it around inside me for the past 1½ years.

As we have mentioned several times in the past, we know God is at work in many ways with the circumstances we continue to face and today God once again solidified that in our minds. Before we were aware of the results of the pathology report and before we received a call from the doctor, God prepared Bonnie and the kids in advance as they were reading from the Bible this morning. Bonnie was reading from Matthew 6 and came across the following verses, which we have read many times over the years:

“Therefore I tell you, do not worry about your life, what you will eat or drink; or about your body, what you will wear. Is not life more important than food, and the body more important than clothes? Look at the birds of the air; they do not sow or reap or store away in barns, and yet your heavenly Father feeds them. Are you not much more valuable than they? Who of you by worrying can add a single hour to his life? “

Matthew 6:25-27

Following this, Bonnie went to a list of verses she has been compiling over the summer to add this text to the list and the verses on the top of the list were from Psalm 112:

“Happy are those who fear the Lord. Yes, happy are those who delight in doing what he commands….When darkness overtakes the godly, light will come bursting in. They are generous, compassionate, and righteous….They do not fear bad news; they confidently trust the Lord to care for them. They are confident and fearless and can face their foes triumphantly.”

Psalms 112: 1,4, 7-8

So as we enter this new road with all its uncertainties, one thing that is certain; God’s word and His faithfulness. What a comfort and joy to know that in spite of our frailties and weaknesses, He knows what we can handle. Please pray that God will continue to pour out His abundant peace on our family and that He will give the doctors, as well as us, wisdom and discernment in the next steps to take as the pending tests and results provide the necessary information. Thank you for your faithfulness in prayer.

Steve and Bonnie

Monday, May 3, 2010

May 3, 2010

This is an update to all our wonderful friends and family. We were reminded two weeks ago Wednesday, as I had an unexpected stay at Sparrow Hospital, that we hadn’t updated our blog in quite awhile. Our wonderful nursing staff took great care of me again and we got caught up on the latest happenings in their lives in the last 8 months. Lisa got a promotion, Brenda can still see in the dark and Carly’s smile is still contagious! I think we got to see everyone. Steve and I were glad to be sent home on Friday after a chest x-ray, sinus CT scan and a few IV bags of Vancomycin and some other strong antibiotic. For all of you who didn’t know, but were still faithfully praying for me, I have been fighting an ongoing cough/sinus cold for 8 weeks. I feel fine, just a little tired since my Bone Marrow Transplant team has reduced my steroids which gave me energy to burn. I was on an antibiotic for 6 days when Wednesday, April 21st, I spiked a fever of 101.6. We are suppose to go to Karmanos for a full battery of tests whenever it goes above 100.5, so we had to decide if we should make the trip to Detroit or get them done locally. After about an hour of prayer and Steve’s call for an available bed we headed back to 5 West at Sparrow. The girls there were already for me and vitals were taken right away and guess what, no fever! They drew blood, took blood cultures to see if anything would grow, did a chest x-ray, and a CT scan on my sinuses. By Thursday afternoon all the results came back negative. Steve laughed and proceeded to compare me to taking his car in to the mechanic when you hear a squeak and the mechanic call and tells you he has driven it several times and can’t seem to find a problem. We don’t know why, but God does, and it was nice to walk in and see everyone on 5 West, but home was so sweet!

I am down to having appointments every 3 weeks at Karmanos and they continue to reduce my immune-suppressant drugs as my body starts to become friends with my new bone marrow. These suppressants are what keep me out of crowds and public places without a mask on. It’s not the places that give me the colds, it’s what my family brings home. They have a cold for 3 or 4 days and I keep them 2 weeks, with this current one at 8 weeks. Continue to pray for the health of my family and that my liver enzymes will continue to stay normal. When the enzymes go up, they will increase my medications to settle down the Graft-Host Disease, which results in a longer recovery and no crowds. Either way we know that we are getting the best care, as God is in charge of both Steve and my health.

Update on Steve. He has had two PET scans and one CT scan since his last radiation treatment at the end of September. Things continue to stay in remission and no signs of any tumor growth on his sacrum. We are so blessed and are ready to for an uninterrupted celebration May 12th, Callie’s 15th birthday. That will be 1 year ago that I was admitted to the hospital and missed the end of her day. We are looking forward to a strong and healthy summer with family that we have missed dearly - Fourth of July at Lake Charlevoix and a Gray Family reunion in Gaylord.

Our family continues to look for a “new” normal as we daily look to God for wisdom and guidance. One thing is for certain; our faith is so much deeper and our trust in His sovereign will is so much stronger than a year ago. It doesn’t mean that we don’t have daily trials, or tough decisions continually looming at our door, because we do. Both Steve and I get discouraged with our limitations and how everything has changed. But we hold fast to scripture like Romans 8:28, “We know that in all things God works for the good of those who love Him, who have been called according to his purpose.” With that in the forefront of our minds, our family responds differently to those daily decisions.

One last thing. We’re so thankful for Steve’s cousin Susan who ran the Flying Pig half marathon this past Sunday for the Lymphoma & Leukemia Society’s Team in Training. She and her daughter Jenny ran in the rain early Sunday morning in Cincinnati in our honor and we have attached a picture of them in this blog post.

Once again, thank you for all of your support through prayer and words of encouragement.

Love Bonnie (and Steve too!)

Thursday, March 11, 2010

Hello to all our friends and loved ones,

Here is a long overdue update on how I’m doing. I go to Karmanos every other week. They draw blood and if everything looks good, they decrease my medications by 2 pills. 6 weeks ago, my liver enzymes went up so they increased my steroids to 8 pills per day. I now am down to 2 each morning and hoping on my next visit, March 19th, they will take me totally off them. That would be the first time since my transplant on Oct. 9th that I haven’t been on steroids. It just goes to show that Graft vs Host Disease (GVHD) is continually a challenge. After 100 days they call it chronic GVHD that comes on very slowly and it usually likes to attack your organs like your liver, intestinal tract and kidneys. Sounds pretty scary, but the good news is my GVHD has reared its ugly head twice affecting my liver and responded very well with the steroids. Hopefully my next visit, if everything is still stable, I will begin once a month trips to Detroit. Yea! The downfall to that is my meds are only reduced at my appointments and since I am on 42 pills a day, it will be years before I am weaned off them all. We’re hopeful to start an every other week blood draw here in Lansing and have the doctor adjust my medications over the phone. Until they can reduce my anti-rejection/immune suppressant, (I take 26 of those a day) I still have to avoid groups of people, anyone who has a cold, and wear a mask out in public.

That’s kind of an update for the past 8 weeks. I’m great, but get a little tired in the evenings. I’m fighting a little head cold but as long as it doesn’t come with a cough or a fever, I’ll be fine. I walk 4 miles, 3 days a week and with the weather in the 50’s the last couple days, I’m hoping to walk outside in the evenings. My skin color is still a little brown and blotchy; I eat almost everything except Caesar salads or things containing raw egg. Bacteria can be very dangerous.

I was blessed to have my Hickman catheter removed 2 weeks ago which was used for Magnesium supplements due to it being depleted by one of the immune suppressant meds. After waiting 7 days for the skin to heal, I was able to put my whole body under the shower for the 1st time since Oct. 2nd. Life is good!

On to more praises, I have hair!! I’m sporting about 1 ½” of brown on the top. You can’t see any on the sides but it’s there – all gray! I still wear baseball hats instead of my wig, even to church. The bright colored hats look a little better with the mask on my face. When I wear my wig people think I have some contagious disease. I was even asked in Meijer if I had H1N1. My finger nails have all fallen off and new ones are ¾ the way there. They look as short as Steve’s. They might be long enough to polish for Easter – I’ll pick a color that matches my cool lipstick that one of Steve’s cousins gave me.

I’m doing most of the laundry, all the meals and most of the shopping again. The kids still clean and vacuum since the chemicals and dust could be a problem with my lungs. Every food tastes normal, well almost. I have always loved tomatoes in any form and I can’t even stand the smell of spaghetti sauce - Go figure!

I’m so thankful that I can drive again. As I was sitting in the van, with the window down I was reflecting on how blessed our family is to have such wonderful support and amazing pray warriors who got us through 2009. I can’t tell you how emotional I get thinking of each of you and those I don’t even know, who have made meals, sent cards, verses, taken our children to all their activities, brought gifts and faithfully lifting us to the Lord. I know how long those prayer lists get and how little time some of you have each morning. This ordeal has changed us forever. I know my odds of surviving the leukemia weren’t very good and I was so sick sometimes, it would have been easier to give up. Steve would update the blog and the body of Christ would begin to pray and obviously God wasn’t finished with me yet. Thank you.

We have been asked by so many, “Have you ever wondered why both of you got cancer within 3 weeks of each other?” I was definitely too sick to answer that question clearly, but would love to share some of my thoughts with you now. I know Steve has so eloquently put it in so many of his blog updates that we believe God has the power to heal. Either by a miracle or by the gifts he has given man through medicine. We pray for complete healing of our cancers through either means and we will give him all the glory. We are also aware that healing is not God’s plan for everyone. I know many who have been spared and many whom the Lord has called home. Either way, God had His plan and purpose in each situation, some of these we may never understand this side of eternity. Isaiah 55: 8-9 “For my thoughts are not your thoughts, neither are your ways my ways,” declares the Lord. “As the heavens are higher than the earth, so are my ways higher than your ways and my thoughts than your thoughts.” This tells us that even when we think we know best, God sees far beyond my trial. God saw those molecular developments in our bodies changing into cancer and he could have stopped it, but he chose not to for our own good as well as others. Our family has come face to face with death and we have reflected on it a lot earlier than I think our kids wanted us to.

I was reminded by a friend of an article by John Piper called, “Don’t Waste Your Cancer.” He wrote this on the eve of his own cancer surgery in Feb. 2006. One of the points in the article talked about how it would be a waste of cancer if we didn’t think about death. Psalm 90:12 says, “Teach us to number our days that we may get a heart of wisdom.” Numbering our days means thinking about how few there are and that they will end. How will we get a heart of wisdom if we refuse to think about death?

His last point in the article talked about how it is a waste of your cancer if you don’t use it as an opportunity to show others the truth and glory of Christ. Luke 21:12-13 says, “They will lay their hands on you and persecute you, delivering you up to the synagogues and prisons, and you will be brought before kings and governors for my name sake. This will be an opportunity to bear witness.” Steve and our family have tried to take this opportunity to show you that this trial only draws us closer to Him. His promises are worth more than life itself and we definitely don’t want to waste it.

As you each face your trials, know that you are not alone. You will have the help you need when you call on Him. Philippians 4:19; “My God will supply every need of yours according to his riches in glory in Christ Jesus.” As I said at the beginning of this post, this was long overdue update. I probably should have said this is an overdue update that is long. Sorry for the length.

God Bless You,
Love Bonnie (and Steve)

P.S. Just wanted to remind you that another one of Steve’s cousins is running in a marathon to raise money for the Leukemia and Lymphoma Society. She continues to raise support for this cause. If you are so inclined to do so, you can visit her website, learn more about making a donation.

Friday, January 29, 2010

Friday - January 29, 2010

It is amazing to me how fast time passes. We haven’t updated our blog for 2 weeks now. As usual, no news is good news at the Opper house. It’s great to share with you so many praises. I didn’t have to go to Karmanos this Thursday, but instead I will go next Thursday at 9:00. My liver enzymes were up slightly, from 50 to 67 while on 16 mg. of steroids, but my doctors weren’t too concerned. They are quite confident that this is chronic graph vs. host disease trying to raise its ugly head, so they will take me off the steroids slowly one pill at a time (per visit). I am still getting a magnesium infusement every other night for 3 hours. This will continue until I am taken off the tacrolimus (an anti-rejection and immune suppressant drug). The tacro draws magnesium out of my body which could affect my heart. I am currently taking 20 pills a day and it could take up to one year to wean me off them. The goal is to slowly increase my magnesium pills so I can stop the infusements altogether. This will allow the removal of the Hickmen catheter in my chest, which would be great, as there is always the potential of infection. My hair is starting to grow back, ¼” per month, Yeah! It doesn’t seem to be curly, which we heard is sometimes the case after chemo.. I’m just excited to have some hair for warmth. I don’t know how you guys do it, when my neck is cold, I’m cold all over.

I was thrilled to be able to mask up and attend another basketball game of Caleb’s. I definitely stand out in the crowd. I’m the bald one, in a pink baseball cap with ¾ of my face covered by a yellow mask! Little children are frightened to death and stay as far away as possible. I have to admit, I look pretty scary. I was able to visit with a friend who has lost the sight in one eye, through a tragic ordeal. We were able to laugh and cry, or at least I cried (what a surprise!). We talked about the twists and turns our lives have taken this past year. But one message rang clear, God has a purpose and plan in both our situations, and His grace is sufficient to carry our families through. She even had the opportunity to tell her story at our Teenworks home school group on Wednesday. She did a wonderful job, as only Mary Grace can do and it was very clear to the audience that God’s sovereign hand was in every step of her accident.

Such is with each of our lives. Tragedy will happen and where will your source of strength come from? Will it draw you nearer to Him or will you let bitterness and resentment take root. Could it be that one of Satan’s major strategies is to divert us from praising God. He knows that God delights in our praise and understands the rich blessing of praising Him brings to us. Like Paul, you can be “sorrowful yet always rejoicing” – 2 Corinthians 6:10. We can groan about our sufferings in this fallen world, but still triumph in the hope that through our suffering the Savior’s purpose will be fulfilled. So let’s take some time out of our busy day and celebrate in His sovereign will, His limitless power and his unconditional love.

Blessings to you all,


Thursday, January 14, 2010

Thursday 1/14/10

Happy New Year! I guess we can still say that fourteen days into 2010. This update is long overdue as it becomes increasingly evident as each day goes by and we hear from more friends wondering about Bonnie’s status. As our life sloooowly transitions back to a “new” normalcy, updating this with a new post gets overlooked and we apologize for not being as faithful as we should in keeping you up to date.

Overall Bonnie is doing well in the eyes of the team of her doctors. With that said, it has had its ups and downs. We are still traveling down to Detroit once a week for a clinic visit, but as Bonnie now approaches Day 100 post transplant (today is day 97), we’re looking forward to the day when the visits become every other week, then once a month, etc. About three weeks ago, Bonnie’s liver enzymes increased above a normal level. This is something the doctors watch closely and felt it was caused by one of the meds she is (was) on, multiple blood transfusions (which she had last summer) or graft versus host disease (GVHD). They eliminated the med and replaced it with an alternate and the next week the enzyme numbers were even higher, but not a “dangerous” level, but of concern. The doctors increased Bonnie’s steroid level last week and today the liver enzymes were back down to a level lower than three weeks ago, so that was an answer to prayer. They are going to continue Bonnie on the higher steroid amount for the next week and the reevaluate her prognosis again.

The other issue of concern has been a horrible cold Bonnie developed over a week ago. Fortunately there has been no sign of infection, so it has just been a chest cold hanging on tight. Today she received an IV bottle of “immune booster” which our Nurse Practitioner said should help Bonnie fight off the cold.

Please pray for Bonnie’s mental endurance in addition to physical endurance. As the days go by we continue to learn more about her long term condition and care. It can still be overwhelming as we ask more questions and gather more answers. It can become discouraging to Bonnie thinking about the prospects of hitting Day 100 does not necessarily mean she is “out of the woods”. She is on the right path, but GVHD can hit anytime, including years from now, it’s just an unknown she has to manage mentally. More than likely she will be on “anti-rejection” meds for over a year, which means she will have to continue with many precautions such as wearing a protective mask going out in public, staying covered up when going out in the sun and many other restrictions. We are, however, very grateful for each day God has given her and will give her in the future and with minor modifications and adjustments we can adapt to a new “normal” lifestyle.

Because of the many prayer warriors who read this, we have a specific request for family friends of ours. Their (almost) twelve year old son, Micah, has recently been diagnosed with B-cell lymphoma. They are currently at Mayo Clinic as his condition was very difficult to diagnose. We don’t have many details at this point, but pray for the doctors’ wisdom as they begin his treatment and for peace for Micah and his family.

Blessings to all,

Steve and Bonnie