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T+75: No more rest.

Well, my intermittent days off were short lived. I’m back to the daily schedule at the infusion center because my WBC isn’t responding as well to the Neupogen shots and isn’t stable without them. Yesterday’s WBC was 1.3 and I got a shot. Today’s WBC is 1.8 – not a big boost at all. My platelets dropped from 85 to 68, and hemoglobin went up from 10.4 to 10.9. I met with Dr. Carroll today, and he said he’s encouraged to see a rise in monocytes, which are a type of white blood cell, because it means there’s some recovery going on in my bone marrow function. On the other hand, he is not sure what’s going on with my WBC, so I’m having another bone marrow biopsy on Tuesday next week. The results should be available by the following Monday (4/11) and will tell us the donor chimerism status and whether there are any CLL cells present in the marrow.

Right now, I’m frustrated. It was so nice to have a few days off, to wake up to Darby’s waking sounds rather than my alarm clock, to spend time playing with her and Jen rather than eating breakfast alone in a vinyl recliner with tubes hooked up to me. From a longer-term perspective, I’m trying hard to stay patient and optimistic, and content with not knowing where God is taking us. I want a program, a plan to implement, a schedule to follow. Submission is not easy.

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T+65: Fear

Over the weekend, Todd began making comments about his white counts not responding to the neupogen shots as they had in previous days. For the last month or so the trend has been for Todd to receive one neupogen shot every 2-3 days. This good sign demonstrated his body was making white blood cells and requiring less support. His recent lab results have shown that his WBC hasn’t been increasing as substantially after getting a neupogen shot. He’s needing a shot every other day. To us, this means Todd is needing more help than before and of course, thoughts of graft rejection entered our minds. Any time there is a pattern change there is cause for some amount of concern. For me, whether there is a sizable drop in Todd’s WBC, his red blood cells or his platelets, anxiety, fear and worry start to creep in.

The differences between transplant in fall of last year and now is that at the start of rejection in September/October which was around 30 days after the transplant, ALL of Todd’s counts were very low. His system was also not holding on to the neupogen, requiring that he be given shots daily to hold his WBC at around 2,000. Now, we’re at day +65, Todd’s hemoglobin/red blood cells and platelet counts have been holding steady which is good news, and he’s needing shots every other day or so.

Today, Dr. Carroll communicated not being overly concerned about rejection, though keenly aware of the possibility. He explained that Gancyclovir, medication to treat CMV – which came back negative in Todd’s system last week – have negative side effects on cell counts and these could be the possible culprit. The “60 day slump” can be expected in some patients and causes a drop in cell counts without the threat of rejection. If it is in fact the beginnings of rejection, we won’t know until we see obvious drops in all cell counts, and/or a bone marrow biopsy is performed. Either way, they can’t stop it from happening.

So, at this point in time we wait! We wait for Todd’s WBC to even out, hopefully into a better pattern than they are now. We wait for the second CMV test to be negative (results by Thursday), so he can have a few days off in between appointments. We wait for day +100 (the day after Easter), which is a very special day. All transplant patients strive to get to day +100 because it means they have a greater possibility of being cured of cancer. On this day, a bone marrow biopsy will be performed to obtain chimerism results again.

Of course, when I start to sense this fear come into my heart, I begin to wonder, “Is my hope in the outcome of this transplant?” or “Is my hope in Jesus, and all he has for me regardless of the outcome of this transplant?” It is such a struggle to trust Jesus day in and day out, especially when things are so uncertain. But, I’m thankful for the opportunity to wrestle with God, and learn more about trusting him in this process. I recognize I have no control and will choose to trust the One who does. For now, I will focus on His word:

“Cast all your cares on the Lord and he will sustain you…” Psalm 55:22

“Show me your ways, O Lord, teach me your paths; guide me in your truth and teach me, for you are God my Savior, and my hope is in you all day long.” Psalm 25:4-5

“Come to me, all who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. For my yoke is easy and my burden is light.” Matthew 11:28-30

Dear Ms. Donor….

Dear Ms. Donor,

A few weeks ago we received your postcard which read, “I’m pretty certain we will succeed! I wish you a Merry Christmas! Yours.” It’s odd to be so limited in the information we can obtain and provide when dealing with a person who is willing to undergo testing, needles, blood draws, neupogen shots, and finally, apheresis for the opportunity to save Todd’s life. Although it’s neat and exciting, kind of in a pen-pal sort of way to have the anonymity, we wish we could send you pictures, share our battles and our victories, and somehow include you in this process. Because after all, you are one of the most important players in this transplant game. And not only have you gone through this process once, but you were willing to be put through it all over again for a second time. Thank you for taking the time to send a postcard, for your simple words of encouragement, and for being so willing to give of yourself literally. We know God’s hand was at work all along. We hope one day you’ll be able to read this and know how appreciative we really are of you.

One thing we’ll share that we’re not supposed to know, but we do…..is that you’re from Germany!!!! 🙂 Two details gave it away. On the day of the scheduled transplant, there were several severe storms covering the midwest and a major part of the east coast. We were told the cells which were traveling from the processing plant in New Jersey wouldn’t arrive until late that night or possibly early morning, and as a result the transplant would be postponed until the following day. When I arrived the next morning, I told a staff member, whose name will remain anonymous, “It’s transplant day, again!” To which she replied, “That’s right! The bad weather and the fact that they were coming from Germany…” The other detail which confirmed Germany, was the lovely picture on the front of your postcard. A beautiful tree, covered in snow with red, lit candles and amazingly intricate ornaments. What I didn’t know, but recently learned is that a German Christmas tradition is to decorate the Christmas tree with live candles. Pretty cool!

You know we’ve never been to Germany! We might have to make a trip over to say hello 🙂

If you’re interested in becoming a bone marrow donor and for the opportunity to help save a life, please consider checking out the National Marrow Donor Program.

T+31: bone marrow biopsy

A bone marrow biopsy is scheduled for this morning. The results of this test (which we’ll receive in about a week) will measure chimerism (what percentage of the donor has taken over Todd’s marrow). We have no reason to believe that this number will be anything but positive, as his cell counts continue to follow a trend. I’d love to say they are all moving upward, but the CMV has impacted Todd’s red blood cells and his platelets. These numbers will continue to drop as the medications given have this negative effect. This is considered normal, and once off these medications (in about 2 weeks), Todd’s counts should be on their way up.

At this point in time, neither one of us has much anxiety about what the next few weeks have in store. We trust God is present and offering lots of peace right now. In September of 2010, the 30 day bone marrow biopsy revealed 98% chimerism, though a couple of weeks later slid to 67% and then further to nearly 0%. It was then we realized the graft had been rejected. So, we’re optimistic that tomorrow’s results will be great, though uncertain beyond that.

Please pray with us, for a long-lasting chimerism. We pray God has much more in store for us beyond this CLL diagnosis, this transplant saga :-), and daily infusion treatments. Although we struggle to remember what life before cancer looked like, we hope and pray for the day when this becomes true!

T+24: drastically different

We can’t tell you enough how incredibly different this BMT journey has been the third time around. Todd is feeling, looking, and eating great! His counts continue to go up, up, up. With the help of neupogen, his WBC are up to 9.5 today!!! Yesterday they were at 2.9. (Normal is between 4.0-11.0) Blood transfusions, we hope, are a thing of the past. His last infusion was two to three weeks ago. Since his discharge home, Todd makes his way to the infusion center daily for labs and whatever iv meds are needed. For example, today he was given hydration and magnesium, though yesterday he only needed a neupogen shot. Todd says he knows he doesn’t have all of his strength, but feels just as good, if not better, than he did before he was admitted for this last transplant. Compared to the fatigue, low cell counts, frequent blood transfusions, loss of appetite, and a bad case of the “blahs”, Todd experienced last transplant, he’s doing super well! We’re so pleased, and very thankful!

We attribute these drastic changes to a couple of things. First and foremost, although I believe our God is never changing, and ever-present, He seems to be so much more tangible, and ever so close this time, and provides us an incredible amount of faith and peace each step of the way. The famous saying, “Third time’s a charm” has new meaning, though we believe it has absolutely nothing to do with luck or chance. Our faith has been incredibly shaped through each of these transplants in different ways. God is good and we give him ALL of the thanks and praise, for each valley and mountain we’ve encountered during Todd’s health adventures. Secondly, we’ve realized how much of an effect the seizure and the anti-seizure medications had on Todd, his fatigue, and emotional well being. Thankfully, Todd experienced more energy and recalled much more of what occurred during this last hospital stay.

In other news, the grandparents have begun their travels home. We couldn’t have done the first, second, or third transplant without their love and support. Thank you Grandpa and Gram for loving us so well, and for being willing and available to give of your time and energy. We will miss you, but look forward to visiting for shorter periods of time in the near future!! 🙂

T+12: “Intriguing”

Today was a good day! Todd’s counts continue to go up. I was amazed to hear his WBC shot up to 2.5, RBC to 9.5 and PLT to 30. These numbers may mean nothing to you, but in overall terms things are going very well. Today was the first day Todd didn’t require a blood transfusion in over a week. Dr. Carroll used the word “intrigued” when commenting on how high Todd’s platelet count (30) was. He expressed an interest in tomorrow’s results to see if Todd could sustain those numbers or if they’d drop, resulting in a need for a transfusion (any number below 20 means Todd needs a boost of these clotting cells).

The grandparents, Darby, and I went up to visit with Todd this evening. We ate some homemade stir-fry for dinner. This is the first home cooked meal Todd has eating in 3 weeks. He was very appreciative! I brought my camera, but forgot to capture a picture for you all. So sorry!

We’re still looking for Todd to be discharged early next week, which could mean either Sunday or Monday. I’m in need of some help. A cleaning crew is being organized to help deep clean our house. If you are interested, available and NOT sick please consider coming out to help. We’ll be meeting THIS Saturday from 10am-2pm. Contact me if you’re interested!

T+10: Awesome!

Today’s WBC is 0.4! This is right on track with what we’ve been told to expect at this time. After holding steady at 0.0 for the past week, an increase is a welcomed improvement. It means that engraftment is starting. We won’t know better information on the strength of the engraftment until a bone marrow biopsy is done at T+30, so this little bump will have to hold us over for now. Now that those important germ-fighting cells are beginning to grow, there has been some talk of discharge home. Although it isn’t set in stone, Dr. Carroll says that I may leave early next week, or maybe even as early as this Sunday!

Tests have also shown that the cytomegalovirus (CMV) is back. This is not unexpected, since it was present last time and at Stanford. I’ll begin treatment for that with immunoglobulin, then follow with gancyclovir. Dr. Carroll doesn’t want to start with gancyclovir right away because it can have a side effect of lowering blood counts.

Jen says: We continue to be cautiously optimistic, though thankful for how well things are going. Our focus has been much different this time around. Although a cure from CLL is important to us, it hasn’t been our main focus. It has been much more about our journey than the end goal. God continues to teach us a lot about trusting him in this process rather than ourselves.

God, thank you for today’s little success. Thank you for being our biggest cheerleader, for laughing and crying with us, and most importantly, for walking with us as we do life. Thank you for coming near to us and loving us even when we doubt you and your plans. May Your will be done!