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

Wednesday, August 12, 2009

Wednesday

Thank you for your care and interest in taking time to keep up to date on the status of the challenging journey we continue to face each day. There hasn’t been much to report or change in status since our last update a week ago Monday, until yesterday.

Yesterday Bonnie had a follow up appointment with “our” oncologist. She is still in remission and her twice weekly blood labs indicate that the level of white blood cells is in the normal range, her platelet level is also normal and her hemoglobin remains slightly low, but acceptable and an answer to prayer.

The looming bone marrow transplant is still off into the future, as a donor has yet to surface. If you recall from our last update, there are six potential perfect matches, but the process is onerous and time consuming. We have yet to hear if any of the six have agreed to provide blood samples to be sent to Karmanos. Once received it is fourteen days until the match is verified, and assuming the match is confirmed and someone is willing, then there is another two weeks to process the insurance approval, followed by a physical of the donor.

As a result, our oncologist does not want Bonnie to go any longer without a round of consolidation chemotherapy to maintain her remission status. This means five days back at Sparrow Hospital as an in-patient for three rounds of a more concentrated chemo like she had the first two rounds. The doctor did say that he would review Bonnie’s file to determine if this particular chemo was the culprit that caused so many of the side effects she experienced. If so, he indicated that he would look for an alternative chemo that could provide the same results without the harsh side effects.

When will this occur? Unfortunately, it will occur sooner than we had expected. Bonnie will be admitted this coming Monday (August 17th) and if everything goes as planned, she will be discharged Friday afternoon (August 21st). Please pray:

1) That Bonnie will have an overwhelming peace as Monday draws near. She knows too much this time around and it is easy to succumb to fear and discouragement.

2) That the doctor will have wisdom and discernment in selecting the best type of chemo for this treatment.

3) That Bonnie will not have the same side effects she experienced last time and that her stay will be limited to the planned five days.

4) That we will glorify God with the proper attitude as this trial continues.

As far as my (Steve) status, my last (hopefully) round of chemo is scheduled for August 20th. I’m slowly coming out of the side effects from the last round two weeks ago. I continue to fight a remnant cough and wheezing from the upper respiratory issue that started four weeks ago. I’ve been able to work five to six hours each day which is a good distraction from some of the physical ailments. My hair has been falling out steadily. Tonight when I washed it, it all came out, so now I look like Mr. Clean. One of our wonderful children suggested that I get a Mr. Clean earring which was completely dismissed.

Once the chemo is complete, I have a follow up Pet Scan scheduled for September 1st which will reveal the effectiveness of the chemo on the lymphoma and whether or not additional treatment is required. I still have three weeks of radiation that will follow the chemo.

In spite of the many issues we face, God is faithful and provides us with everything we need. We are grateful and thankful for the peace, strength and endurance He continues to bless us with each day. In our weak moments, Psalm 94: 18-19 helps us put our sights back into the proper focus – not on ourselves but on a holy God who sustains us at all times and is the source of the joy that is waiting to fill our hearts and available to us at all times, regardless of life's trials:

“When I thought, “My foot slips,”
Your steadfast love, O LORD, held me up.
When the cares of my heart are many,
Your consolations cheer my soul.”


Thank you for your prayers.

Monday, August 3, 2009

Monday

Today was a little more outside the status quo from an emotional perspective and a little more of a roller coaster. It’s very apparent that God wants us to trust Him more fully than we have as we continue on our journey. He closed one door today and opened up another as a possibility. We learned today that neither Bonnie’s sister or brother were a match as a possible bone marrow donor. That was a setback as we were hopeful that Bonnie’s sister was a match, as they have many similar physical attributes.

We are however, still firm in our faith that God is in control of all things, including the issue of finding a donor. We also know that God can heal Bonnie if He chooses to do so, either within the context and framework of the medical community He has blessed us with, or in a supernatural unfathomable way that our finite minds cannot comprehend. He is the great physician and source of our hope and joy.

The other half of the roller coaster ride was the second call we received later in the afternoon from our Bone Marrow Transplant Coordinator at Karmanos letting us know that she was able to identify on the national bone marrow donor database eight potential perfect matches. The key word here is “potential”. Most names in the database have completed a saliva swab to provide an initial DNA record for gene typing. The typing from this initial swab is a good indicator that we have a match, but more detailed typing is required using blood to ensure that the eight genes they need to match with Bonnie do indeed match. Karmanos is initiating the process with the national donor program to ask seven of the eight (they typically use six to seven names) people to go to a lab to provide blood for further testing. Once the blood samples are received by Karmanos the process takes approximately 14 days to finalize the typing.

One other positive with this news is that one of the eight in the database actually has had the more detailed typing completed and appears to be a perfect match. Our Coordinator will speak with Bonnie’s doctor on Wednesday to see if she wants to immediately commence the transplant process without looking at any of the other seven candidates. Issues that can arise though are the donor’s schedule doesn’t work with our timing or they changed their mind. Obviously these issues have to be worked out and we are putting them in God’s hands and trusting that He knows best.

Just a quick update on my (Steve) status. I did receive my second chemo treatment this past Thursday in spite of the lingering upper respiratory issue that continues to hang on. I am experiencing more insomnia and nausea this time around along with the same abdominal cramping I did with the first round and pray that all will subside soon. We are keeping a close eye (figuratively speaking) on my lungs as they seem to have some fluid building, but presently not serious. Please continue to pray for peace in the midst of the physical challenges I feel and that I will persevere with joy even when I don’t feel like it. This morning I read Romans chapter 5 and verses 3 & 4 might as well have been bolded and underlined by God as I was reading the text because He sure brought it to my attention. I’ve included verses 1 through 5 for complete context and have put in bold type below my new prayer:

"Therefore, since we have been justified by faith, we have peace with God through our Lord Jesus Christ. Through him we have also obtained access by faith into this grace in which we stand, and we rejoice in hope of the glory of God. More than that, we rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does not put us to shame, because God's love has been poured into our hearts through the Holy Spirit who has been given to us."

Please pray this with us as we forge ahead each day, not knowing what is around the next corner, but trusting that God is leading us where He wants us to go.