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Wednesday, November 26, 2008 - 2:38 pm
“What’s Next?”
by Van

Michelle and I have been chatting with a couple of people that mentioned they don’t have a sense of what the next steps are. I thought now would be a good time to discuss this.

Generally, Michelle will be in the hospital until one of her cord blood units engrafts. Here’s a good summary I found online:

The two to four weeks immediately following transplant are the most critical. The high-dose chemotherapy and/or radiation given to the patient during conditioning will have destroyed the patient’s bone marrow, crippling the body’s “immune” or defense system. As the patient waits for the transplanted bone marrow to migrate to the cavities of the large bones, set up housekeeping or “engraft,” and begin producing normal blood cells, he or she will be very susceptible to infection and excessive bleeding. Multiple antibiotics and blood transfusions will be administered to the patient to help prevent and fight infection. Transfusions of platelets will be given to prevent bleeding. Allogeneic patients will receive additional medications to prevent and control graft-versus-host disease.

Extraordinary precautions will be taken to minimize the patient’s exposure to viruses and bacteria. Visitors and hospital personnel will wash their hands with antiseptic soap and, in some cases, wear protective gowns, gloves and/or masks while in the patient’s room. Fresh fruits, vegetables, plants and cut flowers will be prohibited in the patient’s room since they often carry fungi and bacteria that pose a risk of infection. When leaving the room, the patient may wear a mask, gown and gloves as a barrier against bacteria and virus, and as a reminder to others that he or she is susceptible to infection. Blood samples will be taken daily to determine whether or not engraftment has occurred and to monitor organ function. When the transplanted bone marrow finally engrafts and begins producing normal blood cells, the patient will gradually be taken off the antibiotics, and blood and platelet transfusions will generally no longer be required. Once the bone marrow is producing a sufficient number of healthy red blood cells, white blood cells and platelets, the patient will be discharged from the hospital, provided no other complications have developed. BMT patients typically spend four to eight weeks in the hospital.

Everything above seems pretty fair to me except the timing in the last sentence. I’m pretty sure that Michelle will leave the hospital sooner rather than later and that much of the things summarized above will happen but with Michelle going in and out of the hospital as an outpatient. This will likely happen as soon as she engrafts which I think (I need to check) will be marked by her having an ANC (absolute neutrophil count) of 500 cells/mm3. An ANC above 500 doesn’t mean Michelle is normal, but it will mean that she in a “safer” zone in terms of her immune system and it should mean that her new immune system is creating WBCs well. At that point and assuming no complications, Michelle will be discharged so that she can continue to recover at home. This is so that Michelle is more comfortable, but more importantly, it’s because the home is actually safer than the hospital. Michelle’s immune system will still be suppressed (for quite some time) and we don’t want her around the nasty super-bacteria that lives in hospital or the germs from other sick patients. Home is a more controlled environment. Michelle will be going to the hospital every day for blood draws, transfusions, etc. for a while, but the frequency of visits will go down as she continues to get better. If all goes well, Michelle will be able to go home by Day +100.

In general, that is the recovery process. However, many complications typically occur during the recovery process because Michelle’s immune system will be suppressed (leaving her at risk for infection) and her new immune system will also “reject” in different areas of her body (Graft vs Host Disease or GVHD). The name of the game will be a balancing act of managing her immune system. Keeping it suppressed though medications means she will be at continued risk for infection. Letting it run wild and uncontrolled leads to the risk of her new immune system rejecting her body since it’s foreign.

So those are pretty much the next steps. Sounds pretty easy when you just write it, but we know it will be difficult. The most critical period will be the next few weeks. Let me know if this doesn’t make sense. Happy to clarify anything.
Monday, November 24, 2008 - 8:12 pm
Day +4
by Van

Not much to update. Michelle has been mainly fighting mucositis and a fever the past few days. The mucositis makes it really painful to swallow and eat. Basically, her whole digestive system, from mouth on down, is raw and and hurting. Michelle takes pain meds to manage this so that she can eat. She now has a button that pushes pain killers through her catheter whenever the pain is intolerable. We’ve been spending most of our time just trying to get her calories up. It requires lots of persistence on our part though. I think we all feel pretty accomplished when Michelle gives in and eats.

Michelle has also developed a fever. They identified the source today, and the antibiotics seem to work. Neither the pain from the mucositis, the fever, or other side effects are much of a surprise given where Michelle is at in the process. It’s just a matter of being able to tough out all these things (easy for me to say) that come up until her she engrafts and her counts start to climb.

Today has been relatively better. Michelle even found the energy to play some Boom Blox on Wii.
Friday, November 21, 2008 - 1:51 am
Day 0 - Transplant Day - Rebirth
by Van

I wish Michelle could be writing this post, but she is fast asleep. She deserves some rest though after what quickly became a very long, tough day. Since a lot of people want an update sooner rather than later, this will be written from my perspective for now. I’m sure Michelle will blog when she’s up for it.

I’ve decided that I’m going to be pretty open about today’s activities. Partly for record keeping and remembering all the events of such a momentous day. Partly to just give everyone a closer view on our lives (and what a better day than Day 0). And a big reason is to show how strong Michelle is. For those that don’t want to read some of the details…just know that Michelle is fine and both her cord bloods are in her body. By now, they have hopefully navigated their way to Michelle’s bone marrow cavity.

So, today started around 7:30am. Michelle’s physician assistant Michelle and nurse Christa came in to check her vitals. Over the past couple of days, Michelle had developed an issue with differing blood pressures when laying down and when sitting up which was causing all kinds of havoc with her body. As soon as Michelle sat up for her vitals, she began to throw up. Not a good start. Since Michelle had not been able to eat in close to 36 hours, there wasn’t much that could come up except for some nasty, bitter-tasting bile. The nurse gave her some anti-nausea to try and alleviate some of the discomfort. By 9:30, the meds had finally kicked in and Michelle finally stopped vomiting.

It was only during the silence of Michelle sleeping that it hit me that we had finally made it. In less than an hour, Michelle would be receiving her first life-saving cord blood unit. The cells came a little bit later than expected. There they are in the red cooler in the picture below. These cells had spent most of the morning thawing out and being washed for the transplant.

Some vitals right before transplant. Michelle is exhausted.

Michelle was very emotional when I handed her the bag containing her 5/6 mismatch cord blood unit. After some tears of joy, here she is with her life-saving baby cells.

And here they are slowly dripping into Michelle’s catheter.

Unfortunately, Michelle developed an extremely painful headache within 5 minutes of the transplant. Michelle described it as if her head was going to explode. It was tough seeing her grip her head desperately trying to make it stop and it was evident that this pain was unbearable. It was very similar to a headache she had gotten last night. She was given morphine for that one but that did little to lessen the pain. Today, they had to wait a while before medicating Michelle after the transplant, but when they could, they didn’t mess around with Morphine and went straight to Fentanyl. The medical team suspects that today’s head pains might have to do with some of the chemicals in the cord blood solution. Whatever the source, I hope these headaches never come back.

Michelle slept through the next few hours until 3:30pm, when Dr. Delaney, Director of the Cord Blood Research and Transplant Program, and her team came over to deliver Michelle’s expanded cord blood unit. Michelle’s expanded unit had grown to 60 flasks, so Dr. Delaney approximates that she was able to expand the cells by ~100x. Pretty amazing. Here is Michelle with Dr. Delaney and nurse Christa. At this point, Michelle was really drugged up. At least she was able to turn her head for the picture

Michelle slept through the next couple of hours. When she woke up from her drug-induced slumber, she looked like she was starting to feel better. After some tough negotiations, we were even able to convince her to eat something. We drove over to a local Vietnamese restaurant to pick up some food. Here is Michelle eating a small bowl of pho after having already finished a small bowl of wonton soup. Words can’t describe how happy I felt when I saw her finally eat something after only holding down one cup of pudding snack in the last 48 hours.

Michelle was rewarded with her sister Melanie IM’ing her and holding Marshawn on the webcam. In case anyone was worried, he’s still cute as ever. If you look closely, you can see him on her screen.

Michelle and I only talked briefly before she fell asleep again. She described it her hardest day yet. It’s probably true. Michelle has quite a short memory when it comes to pain though. In reality, today was just the worst day of a grueling 7-day stretch. Watching Michelle in such agony is so difficult. But she impresses me every day with how much she can handle. We know that the upcoming days are going to be more difficult before they get better. At the same time, we know that today marks the first day of a new life. Not just for Michelle but a new life for all of us that love Michelle and cherish the impact she has on our lives.
Wednesday, November 19, 2008 - 2:13 pm
Day -1
by Van

So tomorrow’s the big day! We’re all very excited. It’s hard to believe that it’s finally here. It has always seemed like this event was so far-off. I have definitely felt like transplant day could not happen fast enough, and sometimes, I was scared it would never be here.

But we are finally here. It’s the last day of radiation treatment (hooray!) and the day before transplant. It’s quite fitting that Michelle’s transplant is happening a week before Thanksgiving as we have so so much to be thankful for.

So tomorrow’s schedule is pretty relaxed. Dr. Delaney’s team will let the 5/6 match cord blood unit thaw out and will deliver the cord blood to Michelle’s hospital room. It will be transfused through Michelle’s catheter into her bloodstream just like a blood or platelet transfusion. It’s actually quite simple. Pardon the lack of medical terminology…but then the little suckers already know where to go…basically Michelle’s lower back bones.

Four hours later, Michelle will get her 2nd cord blood, a 4/6 match, which has been expanded by Dr. Delaney’s team for the last two weeks. Last we checked, she had 30 flasks of it so now is probably when it’s going through a harvesting process that takes all the stem cells from the 30 flasks and it’s “put” into a smaller volume. That’s probably a really crude way of explaining a very complex procedure. Thank god for the smart people at the Hutch.

And that’s it…that’s the “transplant”. From there on, the two cord blood units will fight Michelle’s current body (hopefully any leftover leukemia cells), which it will think is foreign to each unit and I guess sort of fight it out against each other. Within the next 3 weeks hopefully, one of the units will win out and engraft (i.e. accept Michelle’s body) and will produce white blood cells, red blood cells and platelets for Michelle. At this point, Michelle will start feeling a lot better. In the meantime, we will be busy managing the side effects of all the chemo and radiation and will have to be super careful in terms of infections.
Monday, November 17, 2008 - 11:37 pm
Trippy TBI
by michelle

I get TBI twice a day for 4 days. I stand with my legs between a bicycle cushion underneath to give me a bit of support, but mainly you are standing straight on your feet with your arms to the side holding support rails. You stand inside a 3×3 space surrounded by plastic walls and bars. The radiation beam shoots into your space. I’ll have to post pictures of it because it’s hard to describe.

My 1st appointment was at 8am yesterday. It was quite surreal, mainly in part because I was probably dehydrated and was not given dexamethazone (they don’t normally pre-med with this for TBI). You get zapped 2 times in the front and 2 times in the back. I think each zap lasts around 5-7 minutes. By the 4th zap, my ears started ringing, I had cold sweats and things got very bright. I thought I had said out loud, “I think I’m going to faint. I don’t feel so well.” I guess I didn’t say it loud enough, but luckily the technicians soon realized that I needed a break so they stopped mid treatment to let me sit and barf. It took a while for me to come to my senses and for the bright lights to go down. I think my body knew that something weird is up.

Off to a bad start, which only means that I can only go up from there right? I was loaded up on hydration and medicine so the afternoon session went very well. This morning went well too. Unfortunately during my 4th evening session the darn computer broke so I had to stay an extra 20-25 minutes in the tight contraption. I think my body has a limited threshold before it starts to rebel with nausea, headaches and overall ill feelings. I immediately got a dose of IV Ativan that took the nausea away when I got back to my room.

I probably shouldn’t call them “zaps,” because you don’t feel anything, except hear the buzzing sounds while the machine is on. Each zap feels like it lasts a long time, but I haven’t counted. Today I tried doing Buddhist mantras, “Namo tassa, bhagavato, arahato samma sambuddhasa”….I said it about 50 times during each “zap”.

I’m happy that I have 2 more days, 4 more sessions of TBI to go. Then is the BIG DAY!!!! All of my counts are low, but as to be expected. I got 2 units of red blood cells today, my wbc is 0.86 and my platelets are 50k. Other than that, my room is nice, the nurses are great, the food is bleh (but I blame my changing taste buds), and my energy level is still okay. No need for naps yet!

I miss everyone so much. I hope everyone has marvelous plans for Thanksgiving. Van just told me that the Hutch did a Thanksgiving dinner drawing for its patients and I won a complete Thanksgiving dinner to be sent to our apartment. I tell ya…cancer and all…I’m still a very lucky girl! Many things to be thankful for too.

p.s. Marshawn is back at home. My brother and his sweet girlfriend is nursing him back to health. (Thank you so much Michael and Casey.) He’s doing much better. I can’t believe his overnight stay was going to be 10X more expensive than my own hospital stay. Thank god for puppy insurance.