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T-7

So for those of you who don’t remember the counting system from last transplant, I’ll explain it to you. We begin by counting in negative numbers until transplant day, and then counting up after transplant occurs. Today is -7; seven days until Todd receives the donor cells which will give him his new immune system! September 3, next Friday is transplant day and it is considered day 0. Then, we will begin counting toward day 100. The staff looks for certain events to occur during this time. For example, around day +11 Todd should be experiencing the “worst sore throat” he’s ever or will ever have. Between day +10 and +21 signs of engraftment will be visable, and making it to day +100 is great news and a good indication of a cure.

Today, Todd is doing pretty well considering, though very tired and has slept most of the time I’ve been here. He didn’t sleep great last night cause the bed is uncomfortable. I will look into an egg crate to see if that will help. The campath started around 10:30am, and it is still going. The iv chemo should end around 5 or 6:30pm. So far he’s been doing well, though some episodes of chills, fast heart rate, fever, and vomiting (all symptoms of this drug) have occurred, but the nurse says he’s doing “really well.” The doctor came in and said the first day of this drug is usually the worst. If this is the worst, then we’re doing GREAT! One day at a time, right?

I’m a little stir crazy, cause I don’t feel like I’m doing much and it is really hard to watch him go through this process. I think Todd is calmed/comforted by my presence. I just feel a tad pulled, wanting to be with him and wanting to be with Darby. I will say that I’ve felt the Lord’s presence and His strength has given me peace. Thank you, Lord!

I’m not sure how Todd is doing emotionally/mentally. He did say earlier today that he has an easier time when he’s feeling well, obviously. So, I imagine there has been some anxiety today. He was given ativan to calm himself after vomiting, which helped him go back to sleep. Pray for his mental state, especially when every moment of every day is full of unexpected physical ups and downs. For example, even over the course of writing this message his heart rate has jumped from being in the 100s to being in the 120s and he has developed a fever…and now, an hour later, things are moving more toward normal.

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Go!

Here we go…..

Todd’s doing well! There was no anxiety or stress this morning (thank you Lord), and we encountered friendly and helpful people which made the admission process smooth and easy. Todd was admitted around 8:30 am and went for his central cath placement procedure around 10:30 am. At that time, I drove home to pick up a few odds and ends (pillows, gatorade, binoculars????? (at his request), dvds, etc.) as well as Darby and her stuff for a mini visit. Grandma and grandpa came about an hour later to pick Darby up for a nap. He ate breakfast, lunch, and second lunch between 11:30 and 2:00. Apparently his appetite hasn’t been affected yet. 🙂 Currently he’s sleeping while receiving an iv medication used as a preventative for pneumonia. We’re told he’ll receive this drug every 28 days. The great news is that he will NOT get chemo today!!!! That will start up tomorrow (see below). So, he’s a little tired and sore from the cath procedure, but overall in good spirits. Go God!!!

His room #4321, faces the freeway and a HUGE construction site with two enormous red cranes. (For those of you who travel down Business 80, the cranes can be a visual reminder to pray :-)) This site is currently where the old front parking lot for the Sutter Cancer Center was, where Todd received many rounds of chemo in the past. It is actually really fasinating to watch all the little construction workers (we’re on the fourth floor, and the site is probably 2 floors below that) hook up and move around objects like large garbage bins and piles of lumber hundreds of feet in the air. I’m assuming the binoculars are for “site” seeing 🙂

Next step….Tomorrow morning around 10am, he’ll receive his first round of chemo. Fludarabine, a chemo drug Todd has tolerated well in the past, will be administered first for 30 mins. Campath will be given next which takes approximately 8 hours to administer, and has side effects such as fevers and chills, aka “the shakes” potentially up to 6 hours after the completion of the treatment. However, the RN reported that 50% of patients do not have any side effects. We hope this is the case for Todd. Please pray for this treatment to go well, as well as possible.

We’re just thankful for a great day; a day to ease into this adventure without any complications. A big shout out to our Lord!!! It’s been pretty amazing to watch HIM settle our hearts and our minds during this process. What a learning experience, to let go of control and choose to put our trust in God. It has been the hardest thing we’ve every done and will do, but such an incredible experience!!! Thanks for the prayers….keep ’em coming:-)

Ready?

That’s the question of the week, I guess. The donor cell collection happened on Thursday and Friday last week, and we heard this morning that there are enough viable cells for transplant. We are moving forward as planned, with admission on Thursday at 7:30 a.m. Between now and then, I have some things to check off my list (I am my father’s son):
1. Mow the lawn.
2. Finish cleaning up the pruned branches/limbs from the plum tree and move them to the firewood stack.
3. Yet another blood draw tomorrow.
4. Pack. Weird, isn’t it? What do you pack for 4-6 weeks in the hospital?
5. Spend quality time with Jen and Darby.
6. Pray.
I have a feeling that some of the things on my list won’t get done.

People and places of recent months:




Postponed.

Some you already know this, but transplant has been postponed two weeks. I was scheduled to be admitted to the hospital this past Thursday, but I got a call from Kathy, the transplant coordinator, last Wednesday morning. She told me that there has been a change in our schedule due to a problem in scheduling the donor collection appointments. Typically, they schedule the donor for two appointments. The first appointment is for the normal peripheral stem cell collection/apheresis. The second appointment is for a bone marrow harvest procedure, and is normally just a backup precaution in case they don’t get enough viable cells in the peripheral collection/apheresis process. Kathy said that the second appointment is not necessary in the vast majority of the cases.

The donor has apparently balked at scheduling the second appointment, for reasons that are unknown to me. As much as I want to know why, there’s nothing we can do about it. The best option at this point is what has been proposed by Dr. Carroll and his staff.

The plan right now is to continue with the peripheral collection/apheresis on August 18-19. Normally, they would proceed with transplant on the following day (August 20, which is when I was scheduled). In my case, Dr. Carroll wants to proceed with caution and run tests on the collected cells to make sure they have enough viable cells before beginning the transplant prep. This effectively postpones my admission into the hospital and preparatory chemotherapy by two weeks, since the test results won’t be known for a few days after collection. In the normal process, the transplant occurs and the test results are run and results obtained after the transplant, but there’s a backup in place already. Under the approach that Dr. Carroll is proposing for me, if the test results show that not enough viable cells have been collected, they’ll get more via the same peripheral collection/apheresis method rather than through the more invasive bone marrow harvest process. The cells that are collected from the first time will be cryogenically frozen until I’m ready for transplant.

My current schedule: hospital admission on August 26, transplant on September 3.

Stay tuned!

On the road again…

…Just can’t wait to get back on the road again… Yes, sad but true. We are headed down the transplant path yet again! This time, we have chosen to have the transplant here at Sutter General Hospital rather than returning to Stanford. We’ll go over the pros and cons and the decision-making process in a later post, but wanted to get this news out now since things are progressing fairly quickly. Here are some of the things we’ve been up to in preparation for this next adventure.

We met with Todd’s oncologist who informed us that Todd’s cell count “looked good”. This information didn’t exactly help in reaffirming our decision to move forward with transplant. However, Dr. Carroll agreed that now would be a good time to begin transplant as Todd’s counts continue to be slow to regain “normal” status, and he’s healthy and strong. So, here we go!

Last week, Todd underwent a battery of tests for a physical evaluation. A chest x-ray, MUGA scan, EKG, and a pulmonary function test were completed, with a bone marrow aspiration and a PET scan to be scheduled in the next week or two. These provide the bone marrow transplant team a baseline for a variety of Todd’s physical capabilities.

A tentative schedule has been made by the bone marrow transplant team. Todd will be hospitalized on August 12, which will begin a lengthy hospital stay of 4-6 weeks. He’ll get a central venous catheter placed, and begin 5 consecutive days of chemotherapy prior to receiving the transplant on August 20. Those of you who have been following this blog since the last transplant may recall that the protocol at Stanford only required a hospital stay of 5 days, though Todd was back in for another 6 days after being released. Sutter’s theory is that the patient will more than likely have to come back into the hospital after transplant because of the high risk of infection, and they would rather keep the patient so they could be closely monitored. I (Todd) have to say that I agree with their logic on this.

We’ve been given our very own BMT coordinator/nurse, Kathy, who is just a phone call away 24/7 during this process, in case of any emergency or questions that creep up. She’s great! Before transplant gets underway, we’ve been discussing needs we’ll have and “projects” which will preoccupy Todd as he’ll be off work for the next year.

We’re in the process of putting together a list of people willing to pray for Todd while in the hospital. A friend is creating a bookmark with prayer requests, the hospital address/room number for mail, and this blog site. These will be handed out at church over the next few weeks. Also, Jen’s been creating a list of everyday tasks which include watching Darby and taking care of her needs, home care stuff (i.e. lawn mowing, errand running, etc), and emotional support (i.e. visitors for Todd while in the hospital, a listening ear for Jen). Balancing Darby’s schedule and Todd’s needs will be challenging. So, relying upon our friends and family will be incredibly important. If you’re able and willing to help, would you please let us know? We warn you, we’ll more than likely take you up on your offer :-).

Jen has multiple draft posts in progress, so there will be more info to come over the next week or so. Stay tuned!

More regular updates?

It’s no longer the Christmas season, according to my calendar. There have been four holidays since New Year’s Day, for you non-government workers out there: MLK, Jr. Day, Valentine’s Day (even though it’s a Hallmark holiday), Lincoln’s birthday and Washington’s birthday. I had three paid days off work, and used them well.

I traveled to North Carolina in January for an extended MLK weekend. My longtime friend Donnie moved there a few years ago, and we hadn’t seen each other since our respective weddings in April and May 2005. Even though we email back and forth several days a week and talk on the phone on occasion (we’re not teenage girls!), we were both looking forward to spending a few days together in person. In spite of some unforeseen events that happened that week and weekend, rain and snow, and me getting a cold, we managed to have a good time talking, hot tubbing, enjoying a cigar on the beach, watching the AFC and NFC championship games, and getting even more manly by putting together his new generator. Alas, I was traveling light that trip because of multiple connecting flights, so I have no pictures. It’s all in my mind, and there’s no cable that downloads that stuff to the computer (whew!).

Over the Super Bowl weekend, I joined a group of guys from church and drove to a cabin in the Kings Canyon area east of Fresno. In a nutshell, it’s extreme man camp–shotguns and clay pigeon shooting, snowmobiling, exploring in the Argo, red meat, beer, poker and other card games, reading woodworking magazines, etc. Good times.

Jen and I spent a few weekends driving around looking at houses. We’ve been thinking about buying our own place for a while, and the market here in Sacramento has been dropping steadily in the last 12-18 months. Some might even say it’s crashing! Regardless of how you classify the market, it’s an opportunity for those of us who were previously priced out of the market to take advantage of lower prices and lower interest rates. After looking at about 100 houses online, driving by about a third of those, and actually seeing the inside of maybe 15 of the ones we drove by, we finally decided to put an offer on one. After a few counter offers going back and forth, we are finally in escrow! This past week has been a little busy with the home inspection, chimney inspection, mold inspection, meetings with our agent and loan person, and lengthy discussions about finances and strategy (thanks, Dad!) At this point, we’re fairly confident that all will work out and we’ll be moving in early April. I’ll have pictures after we close and actually have the keys.

Last weekend, we drove to Palo Alto to meet with a lady who has tentatively offered to let us stay in her house when we do the transplant again. For those who don’t remember, we’re looking at going back to Stanford this summer for Transplant #2. Our generous hosts last year have had some things going on in their lives, and aren’t able to offer their house for us again this year. I must admit, we were really blessed to have that opportunity last year. The reality is that a situation like that isn’t common. Our meeting this past weekend was pleasant, and we are waiting to hear back about whether this housing situation will work.

I also started the referral process to get back to Stanford. A brief recap: Dr. Miklos wants to do two or three rounds of chemotherapy before I come to Stanford for transplant. The chemo will suppress my immune system, which wasn’t as suppressed as it could have been last time. Each round of chemo requires about three or four weeks in between. In order to go to Stanford in early summer, I’ll need to start chemo in the next month or so. Dr. Miklos also wants to do another bone marrow biopsy to “test for CLL with a very sensitive PCR test that we developed for you as part of the protocol”. He is surprised that my white blood cell counts have remained as low as they are (still below normal level). I’m scheduled to do that on March 4. The results of the biopsy will determine a new baseline disease level and may influence the approach the doctors take in treatment this time. All of this means that I’ll be posting more often as more information becomes available.

Here are a couple of specific prayer requests:
1. Housing at Stanford – We need to find suitable housing, just like last year. We are waiting to hear back from the lady we met with last weekend. If that doesn’t work out, we’re still looking.
2. House purchase here – Our lease ends at the end of June. If our purchase works out, we need to get out of our lease to avoid paying rent and a mortgage. In order to do that, someone needs to rent our current house.
3. Wisdom for the doctors at Stanford to determine a course of treatment.
4. Preparation on our part for the transplant – spiritually, mentally, emotionally, physically.

T-8: “HIS power is made perfect in weakness.”

Hello all. This is Jen. Todd’s a little sleepy today so I thought I’d post for us.

So, last night was better than yesterday afternoon. He was very sad and down, but after time spent in God’s word and in prayer he felt a tad better. We played a few rounds of Yatzee and then consumed dinner. He endured the American Idol results show for me and then felt up to watching LOST (best show ever!!) Todd did not have any reactions to the ATG yesterday. Yet another praise.

This morning he was down again. Unfortunately, he was very tearful and sick to his stomach. Thankfully, his radiation was scheduled for 9am which didn’t give him all afternoon to think about the possible reactions to the ATG (even though that is fairly unlikely as he has received 3 days of it now, 2 of which he had no reaction). His appointment was quick and he was back in his room around 10:30. Dr. Miklos (the BMT MD who encouraged us to start this process) came in at the perfect time. He was such a nice breath of fresh air. Normally not on E1, he made a special visit to see how Todd was doing. He was very encouraging and honest about Todd’s progress (all cell counts are fine, no fever, no infections, etc) and the likelihood that a very boring transplant would in our future. He verbalized understanding Todd’s current institutionalization, but encouraged him that it wouldn’t be much longer. We were both glad to see Dr. Miklos! 🙂

Before heading off to my 90 minute massage (the best massage I’ve ever had….There was lots of drooling….I was very relaxed!!), I brought in all of the comments from yesterday’s posting. I must tell you all….YOU ROCK!!! He loved the comments. To tell you the truth, getting up to check his blog and reading your wonderful thoughts are a few of the things he finds great joy in doing everyday. He found GREAT comfort in the scriptures you generously supplied. Please continue sharing your words of encouragement and even your own lives so that he may be up on how you’re doing too. Oh, I also wanted to say “thanks” for the phone calls and txt messages he received yesterday. We listened to the messages over speaker phone and we were both encouraged!!

We continue to pray that God would be sufficient enough for us. At times that is hard to remember, even though we know it is true. I’m sad that Todd is depressed, but thankful for the weaknesses he has so that we can rely solely upon the Lord and HIS strength in our lives. We always said we wanted to come out on the other end of the BMT with a deeper faith…”being sure of what we hope for and certain of what we do not see.” (Hebrews 11:1) We will continue to strive toward that goal one day at a time.

Love you all,

Jen