Saturday, October 17, 2009

Saturday,

Today is Day +8 following Bonnie’s transplant. A week and a day have passed and thus far she is doing very well in the eyes of the BMT team of doctors and nurses. We are starting to see signs of the pending storm that is approaching; more fatigue, headaches and some mild irritation beginning in her mouth.

Being on a floor where all the patients are in some stage of the BMT process, you quickly begin to gauge and benchmark yourself to the status of the others. We know who is new, waiting for their transplant day, and more importantly know who has already had their transplant and when it occurred. There are two patients and their families we have gotten to know fairly well and have regular conversations with them. Both of them had their transplants two days prior to Bonnie’s so we can see where they are at condition wise to ascertain in some aspects how Bonnie is faring.

Yesterday (Friday) Bonnie’s white blood cell (WBC) count actually went up a little (artificially) from 1.1 (1100) on Thursday to 1.6, but have fallen to .7 (700) today. Her hemoglobin has dropped to 8.8 and when it falls below 8.0 will require red blood cells transfused. Her platelets have dropped to 22 (normal is 100 to 150). All of these lowering numbers are expected and with it come the side effects. They started Neupogen injections on Thursday to start the stimulation process of the new stem cells that are residing in the bone marrow cavity.

I (Steve) have been asked a few times about the chemo killing off Bonnie’s WBC without affecting the new stem cells, so those of you who are interested in my best attempt at a common layman explanation, feel free to read on. Say you have a yard full of weeds that you want to kill and replace with new grass. You apply weed killer to your entire yard to poison and kill the weeds. After waiting a few days for the weed killer to be absorbed by the weeds, you overseed your lawn with new grass seed. The weeds continue to die out and overtime they have been eliminated. At the same time the new grass seed germinates, takes root and begins to grow. Likewise, Bonnie’s WBC are like the weeds and the donor’s stem cells are like the new grass seed. I’m sure a BMT specialist would cringe at the explanation and inform me that I’ve taken too much liberty in simplifying something so complex.

We continue to trust God and lay all of this at His feet asking Him to use us in His plans to glorify Himself through all of this, no matter the outcome. Please continue to pray that Bonnie will persevere and have endurance throughout this stage of the process. Thank you all for your faithfulness in keeping us in your prayers. We have been truly blessed by all of you.

Steve & Bonnie

Wednesday, October 14, 2009

Wednesday,

Day +5 since Bonnie’s bone marrow transplant (BMT) and thus far everything is going as well as the BMT team expects and anticipates. Bonnie’s counts continue to decline. As a refresher, the normal range for white blood cells (WBC) is 4200 to 12,000. Today Bonnie’s count is 1500. The normal minimum baseline for hemoglobin is around 12, and Bonnie’s has dropped to 9.6. Normal platelet range is 100,000 to 150,000, and Bonnie is currently at 84,000.

Bonnie has a severely compromised immune system that has been suppressed and is once again neutropenic, which means the WBCs that are neutrophils are non-existent so she has nothing to fight infection. This is however, what the BMT wants to see as the donor stem cells are grafted into the bone marrow cavity. If Bonnie did have a strong immune system, it would fight these new cells.

Those of you following this blog since May, may remember that when Bonnie was previously neutropenic , she was put on a neutropenic diet which prohibited most fresh fruits and raw vegetables, including salads. The good news here at Karmanos though, is the recent adoption of a “non-restricted” diet due to extensive clinical studies completed at MD Anderson Cancer Clinic in Houston which showed no significant difference in infection rates between leukemia patients following and not following the restricted diet. Because of this, Bonnie is able to eat salads, tomatoes on sandwiches, and fresh fruit.

Fatigue continues to be the major issue for Bonnie, which is normal in these conditions of being neutropenic and a declining hemoglobin count. She still walked 2 miles yesterday (not all at once) which is encouraging. She is experiencing numbness in her toes and feet, and up into her calf, which is uncomfortable when she crawls back into bed.

Please pray that the fatigue will be manageable and not limited her ability to walk, which is so critically important. Also pray that all the other side effects that we are waiting to appear will be limited, particularly mouth sores, which can get quite severe and in many occasions creep all the way down the throat to the esophagus. They can get severe enough that it limits or prohibits the ability to eat resulting in a food bag IV. This is the first thing the doctors ask about and check on as they do their daily rounds. Bonnie had a few mouth sores with the previous rounds of chemo and they are extremely painful, so we are praying that they will be limited to non-existent.

Another day in the life of Bonnie living at Karmanos. She continues to be resiliently and incredibly strong emotionally through this process which is an answer to many prayers. That’s not to say she doesn’t have any moments when her emotions are challenged. She does have those times when it’s hard, and with the frailty of our human nature it’s to be expected. Yet we continue to look to Christ who is our Rock who says in Isaiah 51:12 “I, even I, am He who comforts you.” There is no trial that we will ever face that God can’t comfort us.

Steve & Bonnie

Sunday, October 11, 2009

Sunday

Just a quick update on how Bonnie is faring with the chemo and transplant. The Bone Marrow Transplant (BMT) unit has a calendar that is based on Transplant Day as Day 0. Today is considered Day +2. Thus far Bonnie’s key blood components (white blood cells, platelets and hemoglobin) remain at normal levels, but are starting to drop. One of the medications she is on causes her magnesium to be very low resulting in the need for magnesium supplement IVs.

Bonnie is very fatigued due in part from the chemo and not sleeping well. It is difficult for her to get more than two hours of sleep at a time due to nursing shift changes, checking of vital signs, and hanging new IVs. We discussed with the team today how we could structure the schedule such that she might get uninterrupted sleep from midnight to 5:00 a.m.

Right now Bonnie is walking about 2 miles each day. The daily goal set by the team is 10 laps which is approximately ¾ of a mile. It is important for Bonnie to keep walking, particularly when the going gets tough. The walking can be a preventative against pneumonia and other complications. The nurses’ motto is one more lap closer to home.

Both the nurses and the doctors say it is good to be bored, but right now the waiting is somewhat monotonous, yet there remains an element of uncertainty waiting for the storm to hit that is on the horizon. We’ve never been in a hurricane before, but in some respects it must be like living along the Gulf of Mexico somewhere, knowing there is a Category 4 or 5 hurricane 2 to 3 days out, tracking a path that will undoubtedly impact you. It’s just that we don’t know and we’re sitting there wondering how much of an impact it will have on us. Will it be the eye of the storm that passes over us or will we only experience some of the torrential rains on the peripheral of the storm?

So, pray for rest, for patience and for peace as we wait for the weather change to come into focus and be clearer. Thanks!

Steve & Bonnie

Friday, October 9, 2009

Friday (Bonus posting!)

Since this blog started on May 13th, there hasn’t been an occurrence where there were two posts in one day, so this is a first. We share this post with excitement as the bone marrow transplant occurred this evening at 7:15. We are so very thankful for the willingness of the 49 year old male who made this sacrifice for a completely unknown person, Bonnie. We hope that someday we will be able to thank him personally for this incredible act of kindness.

Our BMT doctor was here tonight to administer the transplant and she shared with us that for an unrelated donor, they have established a minimum of 5 million stem cells as the baseline threshold for the grafting, although they are thrilled when that number is higher. While the infusion was occurring, a representative from the lab came to the room with the actual count of the stem cells, which were 3 times the baseline or 15 million cells. This means our donor has incredibly healthy bone marrow. Wow!

Please see our post from earlier today for some of the issues that most likely will occur following the transplant. Specific ways to pray are outlined in the post as well. We are celebrating tonight and glad that this chapter of the book is complete, but recognize the plot that follows is just beginning to unfold and will be revealed in the weeks to come.

Thank you again for your prayers! We repeat this over and over, but it’s overwhelming to us the amount of peace as well as stamina and endurance we have felt through this ordeal. God answers prayer.

Good Night!

Steve & Bonnie
Friday

Today is Transplant Day. At the present time, the Bone Marrow Transplant (BMT) is scheduled sometime between 5:30 6:00 PM this evening, so please continue to pray that Bonnie’s body will accept the stem cells with only minor Graft Versus Host Disease (GVHD), which is where the donor’s marrow (stem cells) attacks Bonnie’s organs and tissues. GVHD can be very severe to mild and a little unsettling to contemplate and think about.

Obviously we don’t want severe GVHD, but the doctors do want to see some minor GVHD, which means the new marrow is attacking any of the remaining tissues/cells that will cause the leukemia to return. In situations like Bonnie’s, where the donor is a non-relative, there is a 60% chance for chronic GVHD which occurs 100 days after the transplant. Acute GVHD normally occurs within the first 100 days; however the percentages of getting Acute GVHD are lower today due to better DNA testing in identifying a donor who matches eight specific genes.

Bonnie thus far is managing the side effects of the chemo very well, with the exception of some nausea (which has been manageable with medications) and fatigue (caused by both the chemo and the anti-nausea meds). Please continue to pray for her physical stamina and emotional strength as they both feed off each other.

Back in May, I (Steve) recall writing in a particular post that with God there are no coincidences. As I was doing my “read through the Bible in a year” which is broken into daily segments, today being the 282nd day of the year, I don’t believe it to be a coincidence that today’s New Testament passage was Philippians chapter 4 as we anticipate Bonnie’s BMT. This is a passage that many of you reading this blog will be familiar with, particularly verses 4 through 13:

“Rejoice in the Lord always. Again I will say, rejoice! Let your gentleness be known to all men. The Lord is at hand. Be anxious for nothing, but in everything by prayer and supplication, with thanksgiving, let your requests be made known to God; and the peace of God, which surpasses all understanding, will guard your hearts and minds through Christ Jesus. Finally, brethren, whatever things are true, whatever things are noble, whatever things are just, whatever things are pure, whatever things are lovely, whatever things are of good report, if there is any virtue and if there is anything praiseworthy — meditate on these things. The things which you learned and received and heard and saw in me, these do, and the God of peace will be with you. But I rejoiced in the Lord greatly that now at last your care for me has flourished again; though you surely did care, but you lacked opportunity. Not that I speak in regard to need, for I have learned in whatever state I am, to be content: I know how to be abased, and I know how to abound. Everywhere and in all things I have learned both to be full and to be hungry, both to abound and to suffer need. I can do all things through Christ who strengthens me.”

As I read this text this morning, it was a good reminder and refresher that these verses capture, to a certain extent, the essence of what our attitude should be, not just today as we anticipate Bonnie’s BMT, but in all situations we face. We can rejoice because we know that God is near and that His abundant peace can snuff out any anxiousness that creeps into our attitude and mind. If we fill our minds with thoughts of God’s character, His truth, His purity, His loveliness, His goodness and His virtues, it will help to promote praiseworthy thoughts which in turn will foster the growth and nourishment of an inner joy resulting in a calming peach in the midst of the life’s storms. Then we can experience contentment in “whatever state we are in”. We CAN do all things through Christ who strengths us.

Please pray that this will be our focus throughout the day as we anticipate the BMT, as well as the weeks to come. Thank you for all your care, concerns and support you have expressed to us one way or another.

Steve & Bonnie

Tuesday, October 6, 2009

Tuesday,

The daily regiment continues for Bonnie here at Karmanos as we anticipate the bone marrow transplant on Friday. Today is day four of the chemo with one more day to go. Bonnie’s key blood numbers remain stable, which is normal during the chemo process. The doctors say that her numbers may not plummet until after the transplant has occurred. The chemo has caused nausea, but can be manageable with medication. Her appetite is thus far okay and she has enough energy to walk about 30 laps per day around the floor. Sixteen laps equal a mile, so she is doing well. A day will come however, when she will be pushing it to get in 10 laps, which is the goal the staff has for every patient here on the BMT floor.

Today they started an immune suppressant IV which is preparing Bonnie’s body to not reject the transplant. The anti-seizure meds give Bonnie a little vertigo type feeling, plus tiredness, but necessary as the chemo is putting Bonnie below the body’s normal level to fight seizures.

Each day slowly drags by for Bonnie and she struggles with discouragement creeping in, but she never questions why God has allowed this to happen. It is hard for her emotionally when we are walking laps to see other patients who are in different stages of their respective transplants. Some barely make it out of their rooms, while others use a walker slowly trying to find enough energy to make it around the loop once. Combining this with the emotions of feeling isolated in a strange city away from family and friends can become emotionally draining for Bonnie, which in turn can affect her physically. It’s easy for me to say to Bonnie that every case affects each person differently and expect that this should give her some level of comfort. Our normal human nature is for fear of the unknown to creep in and consume our thoughts.

If we truly believe God is in control of this trial Bonnie is enduring, then we need to fear Him and not the unknown before us. He knows the unknown and the unseen. Psalm 114:7a says “Tremble, O earth, at the presence of the LORD”. We need to take pleasure in trembling or fearing God by running to Him and not away from Him. In a small hyperbolic comparison, it reminds me of the fear (and respect) I have of the water when I’m sailing. There is nothing like the exhilaration of riding on the crest of the wave watching the powerful rolling waves coming behind it. I’m not scared, but there is however, a healthy fear knowing that the waves and wind can overpower and capsize the boat, but at the same time there is a calming peace that brings pleasure to the experience knowing that the keel and rudder combined with the proper heading or course will keep me safe.

Fearing God and drawing near to Him and following the course He has charted for us is what He wants from us. Please continue to pray the specifics we outlined in our previous blog post and add to that list that we will fear God and experience an inner joy and peace as we wait patiently for the unknown and unseen ahead of us in the next few weeks.

Thanks again for your interest and coming along on this journey with us.

Steve & Bonnie

Saturday, October 3, 2009

Saturday,

As we reflect on the week that was and contemplate what lies ahead for Bonnie, we are comforted knowing that so many are praying for us and our family. Even though we know what to expect with an extended stay in a hospital room, there remains a level of anxiety of coming to an unfamiliar place in an unfamiliar town.

Bonnie was admitted yesterday afternoon to the Karmanos Cancer Center which leases space within the Detroit Medical Center (DMC) and Harper Hospital. The Bone Marrow Transplant (BMT) unit is located on 10 Webber North. Bonnie’s room is in a little alcove corner at the end of the hall, away from a lot of noisy corridors and overlooks the front of the Detroit Medical Center with views of the Ambassador Bridge to Canada and portions of downtown Detroit.

Some of the amenities that we were accustomed to at Sparrow Hospital, such as warm blankets, an open kitchen pantry, an atrium with large windows, and comfortable furniture in the room are not part of the amenities here at Karmanos. We are, however, thankful for other amenities such as a HEPA air filtration system that does air changes every six minutes which means Bonnie doesn’t need to wear a mask when she walks laps nor are visitors required to wear masks. There are fewer rooms in the BMT wing so the nurse to patient ratio is less than Sparrow. (To all our wonderful Sparrow nurses reading this, we have a great appreciation for the workload you endured, including administering the chemo. Here at Karmanos they have a separate chemo nurse that handles that portion. We were truly blessed for the care you provided to Bonnie! Thank you!)

On Thursday, we had to come down here to outpatient surgery for Bonnie to have a triple lumen central line placed. The surgery went well, however Bonnie was and continues to be sore, particularly the movement of her right shoulder. This central line is quite a bit different from the ones she had a Sparrow, particularly the size of the line, which is much larger and made up of a material composition that interacts with her body such that it somewhat fuses with her tissue, providing durability and longevity.

As mentioned in our previous post, Bonnie starts the chemo portion of the regiment today, which runs through Wednesday. During this time she will continue to feel good and have energy, so she is trying to adapt to the new environment and establish a routine the best she can. Our kids have been asked a few times what address cards and notes can be sent to so here it is:

Bonnie Opper
c/o Karmanos Cancer Center
10 Webber North
3990 John R
Detroit, MI 48201

So, this will be Bonnie’s home away from home for the next 4 to 6 weeks based on typical BMT averages. Once her key blood element numbers have come up and she is stable, she will be discharged and then we will move to outpatient housing for another 6 to 8 weeks (again based on BMT averages). Outpatient housing can either be here on the DMC campus where Bonnie can walk to for follow up treatments or within a 45 to 60 minute radius of the DMC. We are grateful for having an opportunity and option to stay in a fully furnished two bedroom apartment in Sterling Heights, which is about 25 minutes from the DMC campus. It all depends on how well Bonnie is feeling at the time, but regardless, God will provide what we need. It’s comforting to know that God knew our needs before this trial began back in May and He has been providing for us ever since. Deuteronomy 11:14-15 reinforces that which we have been experiencing along the journey:

He (God) will give the rain for your land in its season, the early rain and the later rain, that you may gather in your grain and your wine and your oil. And he will give grass in your fields for your livestock, and you shall eat and be full.

We can’t begin to express the depth of our thankfulness for all of your prayers. As Bonnie receives the chemo for the next 5 days in preparation for the transplant next Friday, please pray with us that her body will respond to the chemo as the doctors expect it to with minimal side effects. Also pray that she will not experience any seizures from one of the chemotherapies. Our bodies all have a seizure threshold and one of the chemos lowers Bonnie below the normal threshold so in anticipation of this she is required to take a significant amount of anti-seizure medication to counter the risk. Continue to pray that Bonnie’s body will accept the transplanted stem cells from the donor and that our donor (and his family, if he has one) will be blessed by God in a special way.

Thanks!

Steve & Bonnie