Next round

So the second round of chemo starts next Wednesday (2/10). Todd’s counts are high enough – 1.2k neutrophils. We’ll all go in at 7:30am for Todd’s labs. At 8am, they will insert a PICC (peripherally inserted central catheter) into Todd’s upper arm. Todd will have the PICC for the duration of treatment, all through the remaining rounds. The PICC is needed because the Treanda caused burns to Todd’s vein in his forearm where the IV was placed for Round 1. Apparently this is not an uncommon occurrence. His arm is still pretty sensitive to the touch, and sclerosis is noticeable along the vein’s path. So, rather than burning his veins every round, he’ll get a PICC line. It’s similar to the central venous catheter he had while at Stanford, but in his arm rather than in his chest. It’s not convenient because it has to have a dressing over it and be flushed regularly to prevent clotting, but it’s better than the alternative. On the plus side, they can draw labs from it, so he won’t have to get the needle stick all the time.

Prayer requests:
1. Mental and emotional preparation. Last round was unexpectedly difficult in this area. Jen briefly described this a few posts ago, but I’m writing from my perspective now. I often associate physical feelings and symptoms with particularly noteworthy events in my life, both good and bad. Sometimes this is a helpful trait because I can often trust my gut when I encounter something new. Other times, it is difficult to avoid feeling worse physically because I am depressed or anxious. Last round, I immediately went back to transplant mode mentally when the first reaction to the Rituxan occurred. Intellectually, I knew that the side effects wouldn’t last more than a few days, but I couldn’t get past the present mentally and emotionally.

2. Jen’s endurance. It’s hard enough to take care of a 10-week-old baby. It’s even harder when you mix in a 240-pound, 34-year-old baby. At least I’m not wearing diapers.

3. Our pride. Let’s face it, most of us don’t like to ask for help. We want to be self sufficient. Last round, we were so blessed by the support of friends and family. We are thankful for God’s provision. As much as we like to think we can get by on our own, the truth is that we can’t.

4. Our witness. One of the reasons we have this blog is so that our story can reach people beyond our immediate friends and family. It is also our priority to reflect Christ in our daily lives, regardless of circumstances. This includes our time at the infusion center.

2 months old/ 2nd round of chemo

Darby has hit the two-month mark and has much to show for it! Aside from sleeping 7-8 hours a night (hopefully more consistently as we go on),

Our precious strawberry shortcake

she’s starting to smile,

Aren't I cute??

make bubbles

I'm a bubble making machine!

bring her hands to her mouth, stay awake a little longer, hold her head up with more control,

Not too sure about this bumbo thing!

move around in her crib, coo and make better eye contact.

At the start of her nap...

Her position by the end of her nap

At her last doctor’s appointment, Darby measured in at 10 lbs 13 oz and 23 3/4 inches long. She also received her first set of shots, which was traumatic for both her and mommy. The pediatrician was concerned about the timing of her future vaccines as a few contain live viruses, and Todd’s immune system may not be able to ward them off when his counts are low. She also highly recommended no day care of any sort and limiting her exposure to other children (especially sick children) outside of our home. Jen expressed concerns regarding Darby’s need to strengthen her immune system, but apparently it can wait until Todd’s immune system is stable.

Thanks to Mary Beth, we have a picture of Todd when he was a few weeks old. What do you think??? Darby IS her father’s daughter…for sure!!!

Todd at only a few weeks old.

Todd’s update: His counts as of Thursday (1/28) were 1.7k white blood count, 800 neutrophils, 86k platelets. Chemo is on hold as Todd’s counts are too low right now, but will most likely start the next round either next week or the week after. We’re waiting for his neutrophils to be at least 1,000. We are still adjusting to thinking about another transplant in about 6 months. The search for another donor is on hold until we decide to move forward. Todd will be contacting Dr. Miklos (Stanford MD from last transplant) to see if his recommendations are in line with the oncologist here in town. We have a lot of different emotions and thoughts regarding starting transplant especially so soon. Things have been such a whirlwind in the last few months, it’s hard to imagine jumping into transplant so soon.

Recovery in progress.

It was a rough weekend, but Todd’s feeling much better. Thank you all for your meals, encouraging words and prayers. Even though we don’t always “feel” God working, we can trust He is through you as you lift us up in prayer during the times we have no strength to do it ourselves.

The doctor’s assistant requested Todd come in for IV hydration on Tuesday morning at 8am. A little anxiety crept in for Todd as there now has become a negative association with this infusion center. He had a similar experience with anxiety when we first started transplant at Stanford. Fortunately, he tolerated the hydration well, and he spent some time reading Psalm 86, particularly verses 11 through 13. Praise God, he actually felt better after completing the IV bag. They also drew labs which revealed surprising news. On Thursday his white blood cell count was at 33k (normal is 4k-11k), but as of Tuesday his count dropped to 4.5k!!!! This is a good and a bad thing. He responded well to the treatment, but is approaching a critically low immune system, especially since we believe we can expect his counts to decrease further in the next week. So prayer for germs to keep away, for people who want to love on Todd to be keenly aware of their germs/their kids’ germs, that we remember he’s sick and must continue to follow precautions accordingly.

On our way home Tuesday morning, Todd was interested in some “real” food. Up until this point, toast, chicken broth/soup (thanks Eileen!), saltine crackers, water, and Gatorade were the contents of most meals, though there were no guarantees those would stay down. Grilled cheese and tomato soup was consumed without a problem, and then a chicken burrito and chips (thanks Virginia!) for dinner. I was amazed!

In addition to an increase in his appetite, I knew Todd was feeling better when he began interacting with Darby more consistently for the first time in 2-3 days.

Daddy and Darby reconnecting!

I know it was very difficult for him to feel extreme fatigue which impacted his ability to care for or even hold Darby at times. Darby was a champ, though! She slept well, except for that one night when the diaper malfunctioned…note: the mattress pad absorbs quite a lot of fluid! We were so impressed when she wanted to show off her improved neck control. It was just what we needed after a rough few days. Thanks Darby!

I'm trying so hard mommy!

————-
Saturday morning edit with yesterday’s CBC results: Neutrophil and lymphocyte percentages are back within normal ranges. White blood cells 1.6k, hematocrit 34.4, neutrophil count 0.8. Definitely time to be cautious about germs. I won’t be shaking hands for the time being.

1/6

This is the second post in one week. I think we’re doing pretty good! Well, we survived the first of six cycles, but it wasn’t without a few bumps along the way. Thursday morning started with a tour of the infusion unit at Sutter and an introduction to the nursing staff as they gooed and gawed over Darby At around 11am, Susan, Todd’s nurse inserted the IV and began pumping a bunch of premedications such as Benedryl (prevent reaction), Decadron (steroid for inflammation), and Zofran (anti-nausea). The Rituxan (nasty chemo) was started around 12pm at 34mL/hour. This drug is commonly known to cause a reaction in patients as the rate of the dosage gets “bumped” or doubled. Apparently, because the drug is so potent, it has to be administered very slowly, especially for the first cycle as the body isn’t used to the medication. Initially Todd managed the Rituxan very well, though once the rate was bumped up to 68 mL/hour, he immediately reacted (within 5 minutes) with shortness of breath, became hot and sweaty, dizzy and eventually brought up lunch (yummmmm…cafeteria food – turkey, stuffing, mashed potatoes, and pumpkin pie…just in case any one was curious ) The nurse (not Susan, as she decided it was time for her to go on lunch. We gave her crap for it, don’t worry ) Chris, quickly stopped the Rituxan and pushed saline, and more benedryl. Todd slowly grew more pale and sleepy, though began feeling better. The charge nurse was called in to watch over Todd as they reintroduced the drug. They began at 34 mL/hour again and then bumped it up to 68 mL/hour 30 minutes later. Approximately one minute later, Todd experienced chills and the drug was stopped yet once again. 30 minutes later, the charge nurse instructed the Rituxan be started again, but at 68 mL/hour and Todd tolerated it without a problem. Every 30 minutes thereafter they bumped the dosage. Around 5pm, Todd completed his first round of Rituxan and the nurses hooked up Treanda (no reaction experienced). They stayed beyond their scheduled shift to graciously make sure Todd was safe and stable. After arriving home at 6:30, Todd was very fatigued and went to bed at 7pm and didn’t wake up until 8am the next morning.

Friday morning, Todd expressed that even though he was fatigued he was feeling physically ok, though had some anxiety going into his last treatment (Treanda) of the cycle. He was feeling low mentally and emotionally, so we spent some time in prayer and tried to focus of what we knew was true (e.g. “Be strong and courageous. Do not be terrified; do not be discouraged, for the Lord your God will be with you wherever you go.” Joshua 1:9), not the lies that fill his head (e.g. that this will be just as bad as last time with chemo or transplant, and anxiety and depression will set in.). We were both relieved when Todd experienced no reaction to Treanda and we were in and out of the unit within 2 hours.

This morning he’s feeling kinda low, probably as a result of the fatigue from chemo, but also from the mental fatigue as the flooding of thoughts and feelings sets in from previous experiences of chemo and transplant..

The next step is to WAIT (ugh ) and see how Todd’s counts are affected. If they’re too low we’ll wait a few weeks to do the next round. If they are still high, bring on Rituxan and Treanda for the second cycle!

We feel extremely supported by friends, family, church family and even neighbors. The offers of prayer, meals, babysitting, etc. have been amazing. We’re so grateful. Thank you! It’s caused me to think a little more deeply about prayer. Prayer is something we don’t “rely” enough on, and at times view as less important. I think we most often want to experience the immediate gratification or interactions of those willing to bring a meal, fold laundry, babysit or clean house, because they are so much more tangible than prayer. These gifts are wonderful, but what place does prayer have in these situations? What is prayer anyway?? I know it’s some thing we can’t touch and the outcome can’t be controlled. Why pray? We’re learning that most importantly prayer is the willingness to share in a relationship with Jesus in which we bare our souls…praising when things go well, and asking for help when they don’t, and in turn listening to his response, which in my experience most often is to wait. What do you guys think about prayer??

If you haven’t prayed in a while, I’d encourage you do to so, even if the thought seems a little scary. Just jump in…why not start now? It’s pretty easy and requires that you just start talking. HE is a pretty good listener

We continue to ask for prayer. Prayer for fatigue, mental and emotional stability, and perseverance. Also for Miss Darby as she continues to grow. I pray that she wouldn’t negatively be affected by our current situation, but that we would be better parents to her as a result.

Besides prayer, we have learned that Todd really enjoys reading your comments. Words of encouragement, funny stories, or written prayers have been ways of cheering him up when he doesn’t feel well enough to talk on the phone or have company over. If you’d like to, we’d encourage you to write your thoughts out for Todd, or Jen, or Darby We’d love to hear what you have to say!

I couldn’t end a post without a picture of Darby. Here is Todd feeding Darby this morning. Enjoy!

Breakfast in bed.

Firsts.

We’re experiencing several firsts these days. Of course, this is to be expected with a new baby.

Darby has finished her first month of existence outside the womb. Yes, we believe life begins well before birth, but that’s a topic for another time and place. She continues to grow, eat, sleep, make messes in her diaper, etc. As she is growing, she is becoming more mobile and routinely performs Houdini-like escapes from her miracle blanket.

What miracle blanket?!?!

We try to make sure she gets her fair share of tummy time each day. She’s getting better at holding her head up, but can only do so much.

So much for tummy time - I'm spent!

We’ve had several first visits from family and friends, from near and far. Some even brought us food (thanks, guys!). We feel truly blessed and fortunate to experience everyone’s generosity and encouragement.

Darby’s first Christmas season was a busy one, even though we didn’t go anywhere. See above – first visits from family. We had a house full of people for the better part of two weeks. Although we enjoy spending time with our families, we are also glad to have a quiet house again. Darby sleeps much better without the extra stimulation.

It got a little chilly for some of our guests, so we had our first fires of the season.

Ahhh, the comfort of a wood stove insert.

All our visitors were helpful in different ways – some cooked, some cleaned, some kept me occupied on house projects, and some even read to Darby!

Aunt Amy reads Darby's first story.

Other visitors were mindful of their own health and were careful to avoid getting Darby sick.

Papa Smith was feeling a little under the weather, so he took precaution.

Aunt Karis came to visit while my mom was here, and she brought Abby to meet her new cousin.

Abby wants a friend to play with...comma fool.

All in all, despite the busy time the last six weeks have been, we are again grateful for our family and friends. Here’s one last Christmas photo for the collectors out there.

This stocking wasn't hung over the fireplace.

In mid-December, we needed a babysitter because we didn’t feel comfortable taking Darby with us to my regular oncologist appointment. Since no family was visiting at the time, Darby had her first non-family babysitter: Chuck D. No, not that Chuck D!

Don't believe the babysittin' hype, yo!

This Chuck D!

Honorary grandpa status!

He reported that Darby slept the whole time, which was great news to us after a lengthy discussion with my oncologist. Is that an awkward segue? Whatever. My white count is up around 33k (normal: 4k-11k), with 93% lymphocytes. My platelets are down to around 75k (normal: 150k-400k). In the past nine months, my white count has doubled while my platelets have been reduced by half. In comparison, my white count was 88k when I was first diagnosed with CLL nine years ago. My lymph nodes are visibly more swollen as well. My oncologist feels that it’s a good time to start treatment again. We could wait, but why put off the inevitable? We have known for the last year that my white count was slowly but steadily increasing, and I would need treatment at some point. We just didn’t want it to be now!

So, I’m starting chemotherapy on Thursday with a new combination of drugs. In the past, I received the triple-threat FCR: fludarabine (Fludara), cyclophosphamide (Cytoxan), and rituximab (Rituxan). It was fairly successful, but Dr. Carroll is concerned about the long-term effectiveness of FCR. This time, I’ll be getting the Rituxan with a new-to-me drug called Treanda (bendamustine). Supposedly Treanda may have fewer side effects compared to the FCR therapy, but I’ll wait until after I’ve had it to espouse that claim. This treatment is shorter than the FCR therapy – it is administered over two consecutive days. The first day takes about five hours, and the second day takes about two hours. I’ll get between four and six cycles, spaced about four weeks apart.

Dr. Carroll also suggested that it may be a good idea to think about doing transplant again. We were caught a little off guard by this, even though it is consistent with what Dr. Sayegh (my former local oncologist) and Dr. Miklos (Stanford oncologist) said when we were thinking of doing transplant again in 2008. At that time, both docs said we should wait until I needed treatment, at which time we should consider doing transplant again. So, the thought of another transplant has been in the backs of our minds, but we were hoping for better circumstances. It’s hard enough adjusting to having a baby as two relatively mature and responsible adults, let alone caring for a baby during chemo and eventual transplant. We haven’t fully processed this information yet, so I’ll stick to the facts for now.

The good news is that I can likely have the transplant right here in Sacramento. The reason I went to Stanford in 2007 was that there wasn’t a transplant facility here. Since then, Dr. Carroll was recruited to Sacramento for the purpose of building a bone marrow transplant program. His 20 years of experience and credentials are impressive: He got his medical degree from Stanford, did an internship and residency at University of Chicago Hospitals, and fellowships in hematology and oncology at Johns Hopkins. Before he came to Sacramento, he was the director of the Clinical Leukemia Program and a member of the Blood and Marrow Transplantation Program at the University of Arizona Cancer Center. Before that, he founded the Blood and Marrow Transplant Program at the University of Texas Medical Branch. He was also on staff at the Bone Marrow Transplant Division at Johns Hopkins Hospital, and an Assistant Professor of Oncology at Johns Hopkins University.

We will take our time in thinking and praying through this decision. I have many thoughts swirling around in my head right now, and need to seek God’s direction. At the moment, I know I’m starting chemo this week. We’ll have to wait and see what happens. Please pray along with us as these decisions can at times seem overwhelming. We know that God is in control, but often struggle with trusting Him completely. This lesson is one we continue to encounter as we journey onward in our faith.