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!

Sunday, August 30, 2009

Sunday,

Well, it’s been a week and quite a bit has happened since the last blog post; some expected and others not so expected. If you recall from our last post, Bonnie had just completed a week back at the hospital for some consolidation chemotherapy and I had just completed my third cycle of chemo on Thursday August 20th.

On Wednesday this past week, Bonnie went to Sparrow labs for her every other day blood work. Wednesday afternoon our oncologist called and said Bonnie’s platelets were only 8,000 (normal range is 100,000 to 150,000) and she would need to come in as an outpatient on Thursday (the 27th) for two transfusions of platelets. Her white blood cell count was 4300 which is at the low end of the normal range (4000 to 12,000).

While we were at the hospital on Thursday, the doctors look at the ingrown toenail on Bonnie’s right big toe. The first two rounds of chemo back in May are still impacting both Bonnie’s finger and toe nails. Her large toe nails curled under on the sides and grew into the softer tissue of her toe causing a quite painful open sore. Following the platelet transfusions we contacted the podiatrist who had removed a previous ingrown toenail the week before when Bonnie was an inpatient at the hospital. The podiatrist got Bonnie in later that same day (last Thursday). He did the painful procedure, bandage Bonnie up and sent her home.

On Friday morning, Bonnie got another call from our oncologist informing her that she was now neutropenic based on the lab work they did following the platelet transfusion. As a refresher, neutropenia is when the white blood cells have been eliminated and the neutrophils (the good WBC that fight infection and disease) are zero. Had there been some indicator that she would be neutropenic on Friday; we would never have done the removal of the ingrown toe procedure.

On Saturday morning, Bonnie woke up and her big toe was swollen and red with infection. Over the course of the day the infection spread across the top of her foot and by evening it was three inches up the front of her leg. We called our oncologist and he wanted Bonnie to go to the ER right away. After seven hours in the ER and starting a strong antibiotic through and IV, they admitted Bonnie and moved her back to 5 West where we have spent a good share of 2009.

Thankfully, the infection seems to have receded and is responding to the antibiotics. Bonnie is still neutropenic and her platelets were back down to 8000 and her hemoglobin dropped to 6.1 (normal low is in the 12 range). Fatigue has set in due to the low hemoglobin. Today she received two more transfusions of platelets and 1 unit of red blood cells, with one more to come around 2:00 a.m. tomorrow morning.

Please pray that our stay will be short, her WBC will increase, the infection will subside, and that her platelets and hemoglobin will stabilize over the next couple of days.

As far as me (Steve), please to pray that the up and down side effects of this last round of chemo continues to subside. Just when I think I’m beginning to feel better, another wave comes over me that is difficult to describe. I have a follow up PET scan scheduled for this coming Tuesday to gauge the effectiveness of the chemo followed by 4 more weeks of radiation.

We are still awaiting the blood work results of the three potential bone marrow donors. We expect hear an update this coming week.

We continue to be blessed by your many prayers that lift us up to a holy God who sustains us through this trial. We are grateful for the nourishment we find daily in God’s word. It’s so easy to fall into trying to figure out why this is happening, particularly with the added issue of the infection, followed by the question of “what next”. We are grateful that God has allowed us to see a smidgen of His greatness and to understand that we will never fully comprehend His plan for our lives because His infinite breadth and width is greater than anything we can imagine. It helps to think in these terms to put things into proper perspective and to understand that God is in control of all things. Ecclesiastes 7:14 says:

“In the day of prosperity be joyful,
But in the day of adversity consider:
Surely God has appointed the one as well as the other,
So that man can find out nothing
That will come after him.”


Thank you again for your prayers and support.

Steve and Bonnie

Monday, August 24, 2009

Monday

After a week of additional chemo, Bonnie was discharged from Sparrow Hospital Saturday evening. We can’t say enough about the nursing staff on 5 West that have become like family to us, although we wished it were due to other circumstances. The care and compassion they have shown to us has been incredible, even the housekeeping staff (or environmental services staff) has the same caring characteristics as the nurses. It’s a comfort to know that should an unfortunate turn of events require us to go back to 5 West, we have friends ready and waiting to care for us. Please pray for the 5 West staff as they have an incredible responsibility day in and day out.

Now that we are home, Bonnie is doing okay, however the chemo is still working in her body to deplete the White Blood Cells. Along with the depletion of the WBC comes the reduction of her platelets and hemoglobin. More than likely, she will need to visit the Cancer Center later this week as an outpatient for a blood transfusion. As the hemoglobin decreases the fatigue increases. Thus far she has not had any intestinal side effects like she did the last two rounds of chemo, which is an answer to prayer. Right now the side effects (other than the fatigue) are limited to sores in her mouth, an infected big toe and heels that are sore and tender. The sores in her mouth are very painful and run up the nerve to her ear. This limits her ability to talk and eat, however she does have a “magic” mouthwash that numbs the area to make eating more palatable (no pun intended). The infection in her big toe isn’t serious, however it is very uncomfortable to stand or wear shoes. If you recall, the first two rounds of chemo caused Bonnie’s fingernails to curve in and fall off. Now her toenails appear to be doing the same thing, however it is causing ingrown toenails. A podiatrist came to the hospital to do a minor procedure on Bonnie’s other big toe with the same issue. Because her blood counts are down, she will have to wait to have the other nail cut back or removed. Please pray that the pain will be minimized.

We are still waiting to hear from Karmanos Cancer Center on the testing of the blood of the three potential perfect matches for the bone marrow donor. We are thankful that three out of the six agreed to go to the next step and continue to pray for each of these individuals that they would indeed be a perfect match, that they would be willing to be a donor, that their schedules would fit Bonnie’s and that God would bless them in a special way.

I (Steve) had my (hopefully) last chemo treatment this past Thursday. I wished I could say that my body is getting used to the poison, but it seems the side effects of nausea are prolonged after each treatment, which I learned is not unusual. I have also found that the upper respiratory issue (wheezing and coughing) is not necessarily from a lingering cold, but rather a side effect of the chemo. The coughing becomes tiresome and has strained some of the ligaments along the sternum so it is somewhat uncomfortable. Please pray that I can endure the nausea as well as the coughing and that both will subside soon.

We are grateful for our small group that we have been involved with for over 19 years. They have been the nucleus of the incredible rings of support that have surrounded us since this journey commenced. We had our traditional end of summer dinner scheduled for this past Wednesday when we learned Bonnie was to be readmitted to the hospital. The rest of our group quickly changed plans and brought dinner into the hospital so that we could all be together. They all wore hats so they could be cool like Bonnie and I!

As events and circumstances in our lives ebb and flow, God wants us to continually be in His word as it never loses its freshness. It’s almost as if a specific trial, such as what we’re dealing with, is like putting on a unique set of glasses that opens a whole new vantage point of God’s word that could not be seen before. For that reason, we are grateful for this trial and continue to pray that God will enable us to continue to see more depth to His words we have read so many times over the years. Yesterday we read Psalm 100 as a family:

1 Make a joyful shout to the LORD, all you lands!
2 Serve the LORD with gladness;
Come before His presence with singing.
3 Know that the LORD, He is God;
It is He who has made us, and not we ourselves;
We are His people and the sheep of His pasture.
4 Enter into His gates with thanksgiving,
And into His courts with praise.
Be thankful to Him, and bless His name.
5 For the LORD is good;
His mercy is everlasting,
And His truth endures to all generations.


In verse 1 we are to make a joyful shout or noise to the Lord, regardless of the circumstances we face.
In verse 2 part of that joy is serving Him with gladness and singing, regardless of our earthly trials.
In verse 3 we can take comfort in knowing that it is He that made us and we belong to Him and He knows our suffering. Jesus our Shepherd is watching over us and knows our needs.
In verse 4 we are to be thankful to God for all things, including the trial of having leukemia and lymphoma (which is easier said than done and requires a lot of prayer – particularly when we are feeling the harsh side effects of the chemo and disease as well as the unknowns and uncertainties).
In verse 5 we are comforted knowing that God is good (in all things) and that in the midst of the storm we can still experience his goodness and mercy which is the source of our joy.

We pray that we will continue to be thankful to God for the trial we are enduring. True thanksgiving brings us a supernatural joy that is never ending. Thank you for your prayers and support.

Steve and Bonnie

Tuesday, August 18, 2009

Tuesday

Ecclesiastes 3:11 starts off with “He (God) has made everything beautiful in its time.” We have to continually keep our “timing wants” in perspective with God’s “timing will”. His timing is perfect and based on eternity, while ours is self-centered and based on the “here and now”. Even though we are subject to God’s timing (when it doesn’t fit ours), the Psalmist says in Psalms 103:8 “The Lord is compassionate and gracious, slow to anger and abounding in lovingkindness.”

From an earthly perspective, there is never a good time for leukemia and/or lymphoma. We can look back and dwell on various events missed: a graduation & open house, an 18th birthday, a memorial service for a stepfather and a vacation. Having faith that God has a greater purpose for our unusual sequence of events helps us to come back to the proper focus and perspective of trusting God and His perfect timing. Yet in the midst of submitting to God’s timing that isn’t ours, He is “compassionate and gracious…..abounding in lovingkindness.”

Before updating you on our physical status, we wanted to share with you a snippet of God’s perfect timing that we were able to experience and grateful for His outpouring of compassion. If you have been following this blog, you most likely know that for the past month Bonnie has been feeling better and getting stronger while I (Steve) have been the one experiencing the physical side effects of the chemotherapy. As a result, we have not been able to travel any significant distances since prior to May 12th when Bonnie was admitted to Sparrow Hospital and now with her back in Sparrow for another week of chemo combined with my third cycle of chemo this Thursday, we had a very small window of opportunity to travel to Northern Michigan this weekend to visit Bonnie’s terminally ill father and also visit a few cousins from out of town. This past Friday, we visited Bonnie’s father and Saturday morning he passed away. Bonnie was able to tell him she loved him and he in turn expressed the same to her, so God allowed her to have that closure. There was no other time we could have traveled the 3+ hours North to see him. We also were able to spend some time with cousins at the lake and enjoy a beautiful day….one of the few they have had up north all summer. God is so good and His handiwork so present.

As far as the update on our status…..Bonnie was admitted yesterday for 5 days of chemo. They will be wiping out her white blood cells again as a precautionary measure to ensure she remains in remission. If everything goes as planned, she will be discharged on Saturday, most likely in a neutropenic state, meaning she will have no immune system to fight infections and viruses. She will then receive injections to stimulate her bone marrow to produce new WBC. As of tonight she is doing well and we are praying that she has minimal side effects in the days following the completion of the chemo. I (Steve) have been feeling better the past couple of days with the exception of the cold virus I contracted over four weeks ago that wants to hang on as my system is also taxed from the chemo. As mentioned up above, I have my third (and hopefully last) round of chemo on Thursday. I have a Pet Scan scheduled for September 1st to determine the effectiveness of the chemo which then will be followed by three more weeks of radiation.

In summary, please pray that as we head into this weekend that our side effects are minimal in order that we can minister to each other and our kids don’t have to witness two very sick parents at the same time. We are still awaiting word on whether or not any of the six possible matches for a bone marrow donor are willing to move forward with us. Please continue to pray that someone in this group is indeed a perfect match and willing to be a donor.

Thank you again for your prayers. We are so grateful for you all.

Steve and Bonnie