Friday, October 9, 2009

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

Wednesday, September 30, 2009

Wednesday (9/30/09)

I know we sound like a broken record, as multiple times in this blog we have expressed our gratitude for your care and concern about our ongoing medical situation, particularly Bonnie’s. I (Steve) only need some hair (which is slowly coming in and quite noticeable with a magnifying glass), less sensitive fingertips and the removal of my “infusa-port” (in five months….ugh!) and I’ll be back to normal. Thank you for all your prayers specific to my situation.

Now for Bonnie. Yesterday we had a final consultation prior to her being admitted on Friday afternoon. She saw the oncology dentist, her physician and the pharmacist (who did an excellent job of explaining in a simplistic way the various chemo and meds and what can be expected). We were surprised and caught off-guard by one item that quickly modified our schedule today (Wednesday) and tomorrow (Thursday). Bonnie also has an implanted “infusa-port” that has been used for the IVs she has received since the initial 58 day tour at Sparrow Hospital. Unfortunately many of the “infusa-ports” have a smaller tube that restricts the volume of flow of blood product or other meds which can be pushed through so Karmanos has a special catheter (triple lumen) that is surgically placed. We also learned that this has to be done as an “outpatient” prior to being admitted in order for insurance to cover the procedure. The result is that we have to drive back to Detroit tomorrow (Thursday) morning for an 11:30 surgery, and then drive back to Lansing tomorrow night to turn back around on Friday for the formal admission. God is still teaching us to trust in Him no matter the situation, no matter His timing.

After being admitted on Friday, Bonnie will undergo five days of two different chemotherapies which will completely wipe out her bone marrow. This treatment is harsher than what she has already received, but necessary in order for the transplant. The actual transplant will occur a week from this Friday and will only take approximately 20 to 30 minutes for the stem cells to be transfused into her blood. The physical challenges will start to come into play the week following the transplant from both the side effects of the chemo and declining blood cells and platelets combined with the new stem cells wanting to fight with other cells in Bonnie’s body. We will use a future blog posts to give you additional information on how she is responding to everything.

Please continue to pray for God’s peace for us, as this is what has sustained us throughout the journey. Also pray for Bonnie’s protection tomorrow during the surgery to insert the catheter. Also continue to pray for Cassandra, Caleb and Callie as they will be apart from us for lengthy periods of time. It won’t be easy for them to jump in the car and pop in to see Bonnie, with Karmanos 1 ½ hours away. Thanks for your continued interest.

Blessings to all,

Steve and Bonnie

Sunday, September 20, 2009

Sunday (9/20/09)

Thank you for your continued interest in our ongoing medical situation. If you have been coming back to the blog regularly you found that we have been delinquent in updating it since Labor Day. There hasn’t been much to update as we have been waiting for the bone marrow donor to be lined up.

Since Labor Day, Bonnie endured seven days of an in-home IV of a strong antibiotic to ensure the staph infection she picked up at the hospital was completely eliminated. In addition, her white blood cells dropped this past Tuesday (9/15) so she became neutropenic again and had to resume injections of Neupogen. By Thursday, the WBC were back up and over 15,000, but her hemoglobin was low so she needed two transfusions of red blood cells on Thursday night.

The timing of all this once again gave us an opportunity to trust God with everything, because the timing is ultimately His, even if it doesn’t fit ours. It’s difficult to plan anything not knowing what the next day will bring from a physical perspective. Bonnie and I had been invited to attend a special event at the Answers in Genesis Creation Museum in Cincinnati this weekend. We were hopeful to get away to the event for a change of scenery, however with her first being neutropenic followed by the low hemoglobin, it didn’t look like the timing would work. God was gracious to us, as everything fell into place enabling us to go. We had a wonderful time with friends and staff from the Museum. It was a well needed distraction for us.

Just before we left for the Museum on Friday, we received a great phone call from the Karmanos Cancer Center. The prospective donor that is the best match with Bonnie, out of the three that who are perfect matches, has agreed to be a donor, a 49 year old male. A transplant date has been tentatively schedule subject to a satisfactory physical of the donor which will occur this coming Tuesday. Bonnie is scheduled to be admitted at Karmanos on October 2nd which will be the commencement of the pretreatment to prepare her for the actual transplant day. Karmanos indicated that Bonnie will need to be admitted seven days prior to the transplant date to start additional chemotherapy which will again wipe out her WBC, including the stem cells in her bone marrow this time.

We are thankful and apprehensive at the same time with the timing of this. Our prayer has been that the transplant date would occur such that Bonnie would not need to go back to Sparrow for additional chemo treatments to maintain a remission status. Thankfully that prayer has been answered. At the same time, as we anticipate the long road ahead for Bonnie and the uncertainties that go with it; knowing that it is now right around the corner, is testing our anxiousness.

Prior to being admitted to Karmanos, Bonnie also has the anticipation of getting another bone marrow biopsy at Sparrow, which will establish a new baseline for Karmanos. You may recall from earlier blog posts, a bone marrow biopsy is not a picnic in the park, so Bonnie has this to think about as well.

Please pray for the following things:

1) That the donor’s physical will be satisfactory to continue the process moving forward.
2) That God will bless the donor in a special way and minimize the discomfort he may feel from the Neupogen injections he will need to stimulate his bone marrow for the production of excess stem cells.
3) That Bonnie will continue to see and experience God’s peace throughout this trial and as the day draws near that we relocate to Detroit for a few months.
4) That Bonnie’s strength and endurance will continue to improve over the next two weeks so she enters the process strong.
5) That our children will be spiritually strong, will work together and stay focused on their walk with God and their school work.
6) That we will continue to glorify God through this trial of suffering.

We still don’t know why God has allowed this and realize it is okay to question it, but we do know He has a greater purpose than we can comprehend with our finite minds. We have been encouraged to know that our situation has comforted others who are, or have experienced their own trials of suffering. The other day I was reading 2 Corinthians chapter 1 and verses 3 and 4 stuck out at me with one of those “a ha!” moments. 2 Corinthians 1:3-4 helps us to get a glimpse of why God might have allowed this, although this may only be a part of why:

“Blessed be the God and Father of our Lord Jesus Christ, the Father of mercies and God of all comfort, who comforts us in all our affliction, so that we may be able to comfort those who are in any affliction, with the comfort with which we ourselves are comforted by God.”

The comfort we have experienced from God has been incredible and in some cases indescribable. God is teaching us through this situation how to comfort others who are struggling. Please pray that God will continue to comfort us as Bonnie enters this next phase and that He will use us to comfort others.

One other praiseworthy item, I (Steve) only had to have a total of 7 radiation treatments instead of 3 weeks due to the negative PET Scan. So after Wednesday my treatment is complete and I am in remission. In five months I can have my Infusa-Port removed and hopefully have a full head of hair! Thank you for your prayers!

Steve and Bonnie

Monday, September 7, 2009

Monday (Labor Day)

After a long week at Sparrow, Bonnie was discharged yesterday, which we were all thankful for. It was a week of highs and lows, but overall we saw several answers to prayer. First of all, the infection from the positive blood culture was identified as MRSA, which is a common staph infection found primarily in hospitals. Out of all the blood cultures they did on Bonnie, only one came back as positive and the staph is treated with a strong antibiotic, which Bonnie was already receiving due to the infection in her toe. Bonnie was discharged with a home IV so that she can continue to receive the antibiotic for 7 more days.

Bonnie’s white blood cell count started to slowly come back on Wednesday and was 1500yesterday. Her neutrophils were 750 of the 1500 so she is still neutropenic and has to wear a mask at home and cannot eat most fresh fruits and vegetables unless they are cooked thoroughly. As the WBC continue to increase, Bonnie’s strength also goes up, which is important in preparation for the pending bone marrow transplant.
In addition to being discharged yesterday, we had two other answers to prayer this past week. We received another call from Karmanos on Thursday informing us that the other two potential perfect matches that provided blood samples also came back as perfect matches, eight out of eight genes. So Bonnie now has three perfect matches, so there are options, should one of the three change their mind or have a scheduling issue. Now that there is a perfect match, Karmanos is preparing for final insurance approval, which will take a couple of weeks. Once this has been satisfied, then Karmanos will go back to the National Bone Marrow Registry to inform one of the three that they are a perfect match and ask them to have a comprehensive physical completed. Assuming the physical is satisfactory, a date for transplant will be set. Best case scenario would be six weeks from now. Please continue to pray that everything will fall into place.

The other answer to prayer was the results of my (Steve) PET Scan. It came back with good results with no more chemotherapy required. Tomorrow I go back to radiation planning and measurement to set new parameters for my radiation treatment which will most likely start next week and run for three weeks.

Thank you for all your prayers.

Steve & Bonnie

Tuesday, September 1, 2009

Tuesday

Well, Bonnie is completing her third day of her third tour here at Sparrow. She continues to be neutropenic , so the infection in her foot is being held at bay by a combination of very strong antibiotics. Our Oncologist said that as long as she is neutropenic, she will stay here as an inpatient, which was discouraging news. Each evening she has spiked a fever, with the high of 102.8. If you recall the first time she was in for the long duration May into July, when she spiked a higher fever the hospital staff used a “cold” blanket to help reduce the temperature. That was a miserable experience that Bonnie wants to avoid this time, so she has been putting ice packs under her arms to supplement the Tylenol and thus far it has worked to bring the temp down.

The Neupogen injections she has been receiving to stimulate her bone marrow to produce new white blood cells have had a more extreme impact on her compared to the same injections she received at the end of May following her first and second rounds of chemo. Her bones ache terribly making it difficult to be comfortable in bed as well as crawling out of bed to move about.

On a positive note, we received a call from our bone marrow transplant yesterday informing us that one of the three potential bone marrow donors is a perfect match – 8 out of 8 genes. The other two possible matches still have their blood samples in the lab. The one confirmed match is a 25 year old female. Karmanos is moving to the next step of getting some additional testing completed on Bonnie to submit for final insurance approval. Once the approval has been issued, the donor will be asked to submit to a thorough physical and assuming it is satisfactory the transplant date will be set. Best case scenario is 6 weeks away.

I (Steve) had another PET scan today to determine the effectiveness of the chemo treatments I have been receiving. The results should be available by Friday this week. Assuming the desired outcome was accomplished, I have 3 to 4 weeks of radiation pending.

Thanks for continuing to pray for our family. Specifically pray that Bonnie’s WBC will start to increase soon so that her immune system can attack the infection in her foot. In the interim, please pray that her fevers will be minimal and that she can endure the uncomfortable side effects of the Neupogen injections. One of Bonnie’s more critical concerns is the development of the severe intestinal issues she experienced back in May and June. Thus far she has not had any issues until today. The doctors believe that it could be a resulting side effect of one of the antibiotics, which they have now eliminated from her regiment. Also pray for the potential bone marrow donor who I have named Susan (just the name that came to mind while praying for her - that God might bless her in a special way for her willingness to go through the transplant process).

To conclude this post, we have an interesting item to share as it relates to God’s timing. On Saturday night as we were sitting in the ER, Bonnie said, “I trust God and know He is in control, but I’m having difficult time understanding His timing. He knew I was going to be neutropenic on Friday, so why would He allow me to have the procedure done on my toe on Thursday?” God’s timing is perfect in all situations, although we are not always privy to seeing the reason why for His timing. In this instance however, God did let us see the “why” behind His timing. Yesterday, our doctor informed us that if Bonnie had not had the ingrown toenail removed, the toe would still have become infected and she would have been admitted back to the hospital anyway. Most likely the toe would have been more painful than it already is as the nail would have continued to grow into the tissue of her toe. It is better that the nail has been removed, so even though there is an infection, the toe area will heal quicker once the WBC production begins. So in hind sight, God perfectly orchestrated Bonnie immediately getting into the podiatrist for the procedure last Thursday following her visit to the Cancer Center for the platelet transfusion. She was neutropenic at the time, but no one knew it as the medical team was working off the lab results from Wednesday’s labs. It was the labs drawn on Thursday just before we left to go to the podiatrist that produced the neutropenic results on Friday morning.

Having the comfort of knowing that God is in control of events and the timing of those events adds to the abundance of peace that engulfs us each day. Daniel 2:20-23a comes to mind as a good reminder that God is indeed in control of all things:

“Blessed be the name of God forever and ever,
to whom belong wisdom and might.
21 He changes times and seasons;
he removes kings and sets up kings;
he gives wisdom to the wise
and knowledge to those who have understanding;
22 he reveals deep and hidden things;
he knows what is in the darkness,
and the light dwells with him.
23 To you, O God of my fathers,
I give thanks and praise…”


All glory,honor and praise belong to Him. Continued thanks for all your prayers!

Steve and Bonnie

PS....An additional prayer request that just came up. Bonnie's nurse just came in to inform us that one of the blood cultures the lab is growing has just come back positive that Bonnie has an infection in her blood. It will take up to 3 more days until the type of infection is identified. This could be one of the cultures taken prior to the heavy anitbiotics she has been getting, but we haven't confirmed that it was indeed a culture from Saturday, Monday or today. One of the possible complications that could arise from this is the infection attaching itself to the infusa-port that was surgically implanted just before she was discharge on July 8th. If that happens, they will have to remove the port, which creates other issues along the way. Please pray that 1) the other blood cultures don't grow and indicate and infection - which would mean that the initial culture showing infection has been killed off by the antibiotics and 2) if she still has a blood infection that it would not attach to the infusa-port. Thanks!