Tuesday, November 30, 2010

November 30, 2010

This past Sunday, Bonnie and I watched a pastor teach on accountability as we sat in her hospital room at Sparrow Hospital. Because of your faithfulness in praying for Bonnie and our family over these many months, we need to be accountable to you on keeping you up to date on Bonnie's status and the reason for the frequent updates.

Today Bonnie was transported via ambulance (no sirens or flashers) from Sparrow Hospital to Karmanos Cancer Center where she had her bone marrow transplant in October 2009. Yesterday most of the blood tests for viral infections we have been waiting for from Mayo Clinic came back negative. Deductive reasoning by the team of physicians is that everything (fevers, no white blood cells, mouth sores, etc.) Bonnie is dealing with is most likely Graft vs Host Disease. Sparrow Hospital doesn't have the expertise in providing the in-depth care required for this so they requested a transfer to Karmanos.

Nothing has really improved since a week ago Monday with the exception of the fever is now more or less low grade and for now has only been spiking into the mid-100 degree range, although tonight it has climbed to 101.5 degrees. She continues to endure extreme pain in her mouth, but reluctant to accept pain medications because of the side of effects. It isn't until the pain is almost unbearable that she succumbs to the realization that she needs the masking for relief. Please pray that she might be more accepting of these meds so her body can use the energy to fight the GVHD or whatever else is going on as opposed to the energy being spent on fighting pain.

The transfer from Sparrow to Karmanos today was seamless. More times than not, scheduled activity at the hospital doesn't usually occur as quick as one would want. The idea of transferring was introduced at 9:30 this morning and by 2:30 this afternoon the transport team was rolling Bonnie out of Sparrow. We arrived at Karmanos at 4:00 and by 4:45 the Chair and head physician of the BMT unit and Bonnie's Nurse Practitioner were already examining Bonnie and charting out an initial course of action.

They are running some new tests as well as redoing some of the tests Sparrow did this past week. In addition they are going to insert a PICC line (central catheter for infusing meds and blood draws). By doing so they can start Bonnie on a TPN (nutrition IV) so she can get the necessary nutrients that may have been missing from the smoothie shakes she has been drinking the past three weeks.

We know Bonnie is getting the best care and treatment here at Karmanos, but she is ultimately in God's hands. As more information becomes available we will certainly share it with. Thank-you for your faithfulness in praying for us.

Steve & Bonnie

Friday, November 26, 2010

Good Evening,

Just a quick update on Bonnie. Over the past couple of days she has been pumped with antibiotics and antifungal meds along with all the meds she has been taking since her bone marrow biopsy. Throughout the day she typically has two IVs going at once with various fluids being pumped into her along with the meds.

She continues to have fevers, but the spikes are not as high as they were earlier in the week. Tonight I took her temperature just before leaving and it had spiked at 100.1 degrees, which almost seems normal compared to the 103 and 104 degrees she was hitting.

She is still in quite a bit of pain due to the mouth sores. Today she was more willing to accept dilaudid for pain (I was told today that dilaudid is 5 times stronger than morphine or maybe more concentrated). Unfortunately after the second small dose, she experienced nausea and vomiting a couple of times making her a little apprehensive in taking more later this evening. The pain tonight was probably more severe than she has had because she was willing to have more dilaudid pushed through her IV regardless of the nausea. A little milk first followed by the nurse pushing it slowly seemed to help, although I left 30 minutes after.

Her blood labs continue to be the same without improvement. Her white blood cell count remains non existant, platelets lower than normal and hemoglobin dropping again, requiring another blood transfusion this afternoon. Other items in her comprehensive blood panel are out of normal ranges as well.

So, while Bonnie continues to endure each minute of each hour of each day with all the IVs, pain, nausea, we wait for lab results of tests to determine what she is dealing with, whether a virus, infection or possible, but very rare, a breakdown in the grafting of the stem cells that grafted over a year ago. Most likely it appears to be a virus which her blood has an antibody of a virus test positive. The complication is that the particular virus and how it reacts with a bone marrow transplant and graft host disease. This is something Sparrow Hospital doesn't have expertise in so they have sent biopsy and blood samples to Karmanos for their own testing to determine the best course for treatment, if any. Return of results are slower due to the Thanksgiving holiday weekend.

Please pray that the time will pass quickly and for Bonnie to have both short and long term relief of the pain and suffering she is enduring. Thank you for all the cards, notes, emails, and texts. Your prayers are the most important aspect of help during this time and we are grateful for each and everyone of you.

Steve (& Bonnie)

Wednesday, November 24, 2010

November 24, 2010

Overwhelmed is the only word that comes to mind as I sit here and ponder the past 24 hours. Overwhelmed is the same word that comes to mind thinking about the incredible amount of support you have shown us through all of your prayers. Thank you.

With that said, we are happy to report that Bonnie has been moved out of ICU. It was a 24 hour stay that seemed more like a 72 hour stay. Although it was nice to have a 1 to 1, nurse to patient ratio, it was not a pleasant visit for Bonnie. Her vital signs are much better and more consistent and after many blood draws, the doctors determined she could be sent back to her familiar confines of 5 West.

Bonnie is resting/sleeping now after being awake most of the night running various test, trying to breathe through various oxygen masks and poked enough times to feel like a pin cushion ten times over. So in the quietness of her room, I thought it was important to let all of you know that she is out of ICU.

Although she is out of ICU, she is not out of the woods, unfortunately. The pathology report of the bone marrow biospy from yesterday is still clear of leukemia blasts, but she still has a recurrence of the leukemia in her body. Sparrow is sending bone marrow samples to Karmanos for their review and testing.

Most likely, Bonnie is probably dealing with a virus or infection that is depleting her white blood cells trying to fight the virus. For some reason the bone marrow isn't keeping up making new cells. Because there is not sign of the leukemia in her bone marrow, the doctors at both Sparrow and Karmanos have agreed that Bonnie should be given Neupogen injections to stimulate the bone marrow to produce new white blood cells. Originally there was concern that this could also stimulate leukemic activity, but that concern was eliminated to a certain degree by the results of the biopsy.

She is still receiving strong antibiotics and antifungals as they continue to determine what is going on. Her mouth sores are bad, as I've previously mentioned. Every nurse that has looked at them have made comments that they have never seen sores like these. It took a lot of convincing by nursing staff, doctors and family for Bonnie to agree to receiving IV pain meds today. Her pain tolerance (or stubborness in wanting to keep a clear head) is incredibly high. It wasn't until she couldn't put her lips on a cup containing her protein smoothie because of the pain did she agree to a small amount of paid meds.

At this point we don't know how much longer she will be here, but we do know that we will celebrate Thanksgiving on 5 West. We are thankful for the wonderful caregivers who have become like extended family, we are thankful for you and most importantly we are thankful to God who is in control of all things including those things that are difficult and hard to understand.

Enter His gates with thanksgiving
And His courts with praise
Give thanks to Him, bless His name.

Psalm 100:4

Happy Thanksgiving,

Steve & Bonnie

Tuesday, November 23, 2010

November 23, 2010

Today has been one of the longer days we have experienced since this journey has started. Late this afternoon we taken back a little when we learned that the doctors wanted to move Bonnie from her comfortable familiar location on Sparrow Hospital’s 5 West tower (where we know all the nursing and management staff and they know Bonnie) to the Intensive Care Unit.

Bonnie’s fever spiked back up to 101 degrees last night and then as the early morning hours rolled around her vital signs started to be a little off. Her heart rate was/is elevated, blood pressure low and oxygen level in the blood low. They started her on oxygen around 6:00 this morning and she continues to receive it tonight. Her temperature was closer to normal this morning and at an acceptable level for her to get her 6th bone marrow biopsy. Initial pathology results should be back tomorrow.

Throughout the day her vital signs continued to be up and down so the doctors made the decision that she should be more closely monitored and thus the precautionary measure of relocating her to ICU. Staying on 5 West would have been 1 nurse to 5 patient ratio and tonight in ICU it is 1 nurse with Bonnie.

Needless to say it was a little unsettling for all of us as we moved Bonnie to an older part of the hospital in an area that is for the most part locked down from too much activity. Only immediate family can visit, limited to two at any given time, no cell phones and a lot of monitors, beeping, IVs, and nursing attention. The entire scene and disruption has created additional anxiety for Bonnie.

The fever is very persistent and for awhile was back up in the high 101 range, but finally got within range for another blood transfusion, as her hemoglobin has dropped down again and may be contributing to her high heart rate, low blood pressure and low blood oxygen. The labs drawn tonight showed her white blood cells dropping down to 180.

They have drawn several blood cultures to see what infection and/or fungal is contributing to the depletion of her white blood cells. Tonight they gave her a second IV (which the selected vein to use was very painful accessing), so they could run additional products simultaneously.

For several hours they had a large oxygen mask with an inflatable bag that was strapped to her head to increase the amount of oxygen. The corners of the mask cut across her jaw and put pressure right on the areas where she has a couple of the more severe mouth sores. Meanwhile she was having difficulty breathing through her nose as the mask pulled her mouth open, drying it out. Bottom line is, a long night ahead is pending. I pleaded with the nurse to try just the nose oxygen hose before leaving and thankful that proved to be adequate in keeping her oxygen at an acceptable level. This change seemed to calm her down a little, along with no initial signs of any allergic reaction to a new anti-fungal med being infused.

I know through our network of friends that word would get out that Bonnie was moved to the ICU. We appreciate all the care and concern on Bonnie’s behalf, and want you to know the specific words Bonnie’s doctor said, “we want to move Bonnie to the ICU as a precautionary measure to closely monitor what is going on with her vitals.”

I sound like a broken record, but specific ways to pray include Bonnie’s comfort and peace in the midst of a new environment and uncertainties that lie ahead, wisdom for the medical team to determine what specifically is going on, understanding for the kids, and I guess stamina for me (Steve). Thank you!

Steve and Bonnie

Monday, November 22, 2010

November 22, 2010

It's been a long day, but feel I should update you all on Bonnie's situation. Today she was admitted to the hospital as she woke up this morning with a temperature of 104 degrees. In addition she had GI tract issues (aka: diarrhea)this morning which is something she hasn't dealt with since her 58 day marathon in the hospital at the onset of the leukemia in 2009.

Her temperature stayed between 103 and 104 degrees for most of the day and physically took a toll on Bonnie. Between the combination of prayers mixed with ice packs around her body and heavy duty antibiotics her fever broke this evening and when I left the hospital at 11:00 tonight, her temperature was 98.4 degrees.

She is still having some GI issues, so that remains a concern as this could be Graft vs Host Disease flaring up where we don't want it to. It could also be something related to the fever. Key to this is the GI tract being replenished with new white blood cells, which is something Bonnie currently does not have which is the million dollar question...why did her white blood cell count drop down next to nothing?

The most logical theory from Bonnie's brother is that her body is fighting an infection of some sort and the white blood cells she has have been used up in attacking the infection and because she has a compromised bone marrow system (due to the transplant), her bone marrow can't keep up making new white blood cells to replace the ones fighting the infection.

Unfortunately with all of this, it is requiring another bone marrow biopsy tomorrow. Something Bonnie said she would never have done again. On the plus side of things, as an "inpatient" they can give her all kinds of meds to help her forget the procedure and be happy the doctors came to visit.

You can pray that she won't be anxious leading up to the procedure (we are unsure of the time at this point) and that the pathology might be able to identify what is going on with her system at this point.

Thanks for your continued interest and care.

Steve (and Bonnie)

Sunday, November 21, 2010

November 21, 2010

Just a quick update on Bonnie since the last post on Thursday November 18th. This past Friday, we were able to get into the hospital for a blood transfusion for the purpose of increasing Bonnie’s hemoglobin to give her some needed energy. Two units of blood take almost an entire day to transfuse, however Bonnie had energy within an hour of the first unit. It really was amazing as her color changed and she wasn’t sleepy, even with the pretreatment of Benadryl and Tylenol.

We thought this might give her the boost and jump start she needed and additional strength to endure the sores in her mouth and under her tongue. The multiple canker type sores under her tongue are equivalent in size to a large kidney bean and inside her cheeks similar in size to a quarter. Along with the sores on the inside of her lips is quite a bit of swelling. All of this is attributable to the reduction of the steroids and immune suppressant meds to increase the graft versus host disease to fight the leukemia due.

We just arrived home from the hospital where they did additional blood labs and met with the doctors in radiation therapy. Bonnie’s white blood cell (WBC) count has fallen to 600 (again, normal range is 4,000 to 12,000) and the neutrophils (the WBCs that fight infection) are 10 (normal being 2,000 to 10,000).

So for now, Bonnie is extremely immune compromised. We don’t know why her numbers have fallen. Radiation therapy says that the type of radiation she is receiving would not cause the WBC number to go down like it has. Bonnie’s BMT doctors were leaning more towards radiation causing it, so for now we wait and see.

We did find some leftover magic mouthwash from when Bonnie received her BMT as that process also has mouth sores of a different type. The mouthwash is giving her temporary relief for 25 or 30 minutes, but that doesn’t help during the night for sleep. Thanks for praying. Please continue to pray that the WBCs will increase on their own, that she can get much needed rest and have healing in her mouth.

I’m sure many of you know or have memorized the following verse from the book of James 1:2-4:

“Count it all joy, my brothers, when you meet trials of various kinds, for you know that the testing of your faith produces steadfastness. And let steadfastness have its full effect, that you may be perfect and complete, lacking in nothing.”

Pray that we will have joy in the midst of this trial, that our faith will be strengthened, and that we will persevere to the end. We know Bonnie will at some point be made “perfect and lacking in nothing” in God’s timing, whenever He decides. Thank you for your love and support.

Steve and Bonnie

Thursday, November 18, 2010

November 18, 2010

It can’t be said enough, thank you again for your prayers and interest in Bonnie’s condition. We continue to labor over future decisions on what to do, although if you were to ask Bonnie today, she wouldn’t do another bone marrow transplant. Any final decisions are a few weeks away, but she is more than convinced that she doesn’t have the strength to go through it again. I don’t blame her, nor do the kids, if she chooses not to do so, as she has been through a war the past year and a half.

In the past few days her physical condition has declined a little. We are not sure how much of the fatigue is from the radiation or from something else. Her mouth sores continue to prohibit her from eating solid food, so her diet consists of protein shakes. She had blood work done yesterday and the results are a little concerning. Her hemoglobin continues to decline so the doctors have given orders for two units of red blood to be infused tomorrow (Friday). This is a 4 to 6 hour process and always carries the risk of allergic reaction, so please pray that the process will be without incident. Hopefully this will increase the hemoglobin and give Bonnie some much needed energy.

Equally concerning is the White Blood Cell (WBC) count which has fallen to 900 (normal range is 4,000 to 12,000). Of the 900 WBCs, only 360 are neutrophils, the important WBCs that fight infection. Normal ranges are 65% to 80% of the WBCs being neutrophils and Bonnie is only at 40%, making her neutropenic. The last time she was neutropenic was immediately following the bone marrow transplant in October 2009. We don’t have a good answer at this point why this has occurred, as in the past it always occurred following chemotherapy. If the leukemia were flaring back up in her bone marrow and peripheral blood, her WBC count would be quickly increasing with blast cells. The problem with being neutropenic, in addition to the susceptibility of infection, is the temporary postponing of her final 5 radiation treatments. It’s radiation therapy policy to suspend radiation treatments when a patient is neutropenic.

On the flip side, the doctors do not want to give Bonnie neupogen, which is an injection to stimulate the bone marrow to produce more WBCs, as they don’t want to stimulate any existing leukemic activity. So, we wait it out to see if the numbers come up and improve and most likely she will have another blood draw on Sunday.

Tomorrow night (Friday) is a special evening out that our family has celebrated with another family for over 15 years; dinner, followed by Silver Bells in the City and the lighting of the Christmas tree at the State Capitol. Bonnie and I missed it last year while we were living in Detroit after the bone marrow transplant. We were looking forward to it this year, with Cassandra coming home from college, so we could all be together. With Bonnie’s condition it doesn’t look as though she will be able to go, which is a little discouraging and disappointing to all of us. Please continue to pray that she would experience God’s peace, would regain her strength and that her WBC count would come up to normal levels. Thank-you!

Steve and Bonnie

Friday, November 12, 2010

November 12, 2010

Greetings. Today Bonnie had a regularly scheduled visit to the Bone Marrow Transplant unit at Karmanos. The news was not what we wanted to hear, however we do feel it important to update this blog because of your faithfulness in praying for Bonnie and the rest of our family over the past year and a half. We are at a fork in the road with a decision pending on the direction to turn, knowing that regardless of the decision, the long range outlook or prognosis of either direction is laden with challenges.

The good news is that Bonnie has completed twelve of twenty radiation treatments and the leukemia mass in her breast is shrinking. The radiation is now starting to create additional fatigue as well as loss in appetite, but that was to be expected. She will complete radiation on the Wednesday before Thanksgiving which addresses the immediate need, but today’s visit at the clinic was in part to discuss the future course Bonnie should take for long term treatment.

We learned today that the chance of the leukemia recurring is 100% and that this mass in her breast is not a single incidence, but just the first recurrence. Because of this, the doctors at the BMT clinic are recommending another bone marrow transplant using a different donor. What this would involve would be another round of chemo for a week with the objective to kill off as much of the leukemia as possible, followed by surgery to implant a new central vein line catheter, another week of chemo to eliminate the new bone marrow she has developed, concluded with the stem cell transplant. What we know about second transplants is they are much harder on the body and the percentages of success are less than a first transplant. If you have followed this blog leading up to Bonnie’s first transplant, you may remember that we were told that even with a transplant there was a 50% chance the leukemia would recur in the first five years; of course Bonnie’s recurring within the first year. With a second transplant, the statistics show that there is a greater chance of recurrence in the first five years. Of course what was not stated above, are the entire issues post transplant that Bonnie has dealt with for over a year now from the first transplant. She is tired, has a mouth and throat full of sores, can’t shake colds and other illness, continues to take multiple pills several times each day and has to be mindful of all the dos and don’ts. She is weary (we all are weary) and to think about going through all this again with the potential long term outcome having poorer odds than the initial transplant, it is overwhelming.

The alternative is to not do another transplant. The doctors said if that was the decision that they would change up some of the medications and when the leukemia surfaced they would treat it with chemo to settle it down. This would be the process each time the leukemia recurs, however it will get to the point where the chemo will not work anymore and at that juncture their focus would be on Bonnie’s comfort.

In the interim, the BMT doctors are initiating the process for a second transplant; insurance approvals and donor identified. This process will take several weeks, so no decisions will need to be made until this occurs. So during this window is where Bonnie and the rest of us will pray about and evaluate the direction to go. Please pray for wisdom, clarity and discernment, as well as peace, as we struggle with this decision. We trust, take rest in, and thoroughly believe God is in control of all circumstances and situations, regardless of the pain, suffering and heartache. One of the kids said “it isn’t fair”. I can only hold fast to the fact that life isn’t fair and take comfort in the fact that throughout scripture there are occasions to look at that “weren’t fair”. In the book of Genesis, Joseph’s brothers sold him into slavery and then he was falsely accused by his master’s wife and thrown in jail. Was that “fair”, maybe not, but God had a greater purpose that unfolds later in his Word. In the book of Exodus, when Moses sent out twelve spies to scope out the Promised Land, only two of the twelve, Caleb and Joshua, had the faith and confidence in God to take the land. Yet all of Israel sided with the other ten spies and were afraid and lacked faith. The result was God’s discipline of 40 years wandering in the desert waiting for a generation to die off. Was that “fair” to Caleb and Joshua that they had to wait 40 years to enter the land? Maybe, maybe not, but God kept his word and Caleb and Joshua endured and were strategically used by God in conquering the Promised Land. Finally, was it fair that Jesus endured the abuse, scourging and crucifixion as an innocent man? It was the ultimate sacrifice for our benefit to appease God’s wrath because of our sin. All we have to do is put our faith and trust in Him and seek his forgiveness. By doing so assures us eternity with Him and then all those “life isn’t fair” moments become a little easier to endure.

Please pray that we will persevere and endure this trial and make sound decisions. Thank you for your ongoing support.

Steve and Bonnie