Monday, October 25, 2010

October 25, 2010

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

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

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

Steve and Bonnie

Friday, October 22, 2010

October 22, 2010

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

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

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

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

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

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

Steve and Bonnie

Tuesday, October 19, 2010

October 19, 2010

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

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

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

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

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

Steve & Bonnie

Monday, October 18, 2010

October 18, 2010

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

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

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

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

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

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

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

Matthew 6:25-27

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

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

Psalms 112: 1,4, 7-8

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

Steve and Bonnie