Nancy's Update

I received two units of platelets over the last two days (LC59497 & LC59490).

My doctor has taken me off most of the IV's and switched them to pill form. They are planning on moving me to the Village on Monday! I'm so transfusion dependent still so I can't be far away. I need to visit the clinic daily for blood draws and transfusions, when needed. When I'm no longer on daily visits, they may let me go home.

Except at night and into the late morning, I'm finally free from the IV tree. I feel so liberated! My white cells dropped back to 1100 this morning, but they are still letting me out of my room armed with mask and gloves. They took me to the physical therapy room yesterday. It felt so good to walk on the treadmill and climb stairs in there. I was sore this morning for the workout, but it's a good hurt!

Thank you again for your support. love nance

Today, was a very big day. My white count hit a whopping 2300 (it was 800 yesterday.) I got to walk the halls today, of course, with mask and gloves. I forgot what it looked like outside my room since I've been confined for 36 days. I've been hospitalized for a total of 45 days. whew... The doctor took me off the Neupogen today, so if tomorrows count drops, it's okay. It'll come back up on it's own.

I received two units of platelets today (LC59466 & LC59439.) My doctor thinks I may be discharged this coming Monday. The only big thing left to do is to reduce the number of transfusions I'm receiving. He said I need to be in the "village" for at least two weeks because as it stands, I need to come in daily for labs and platelet transfusions. Once the platelet transfusion decrease to about two per week, I can go home. When I do go home, there will many restrictions. I can deal with that.

So I ordered an egg salad sandwich for dinner. This is what they brought me: 2 hard boiled eggs still in the shell, two pieces of bread, mayonnaise, mustard and salt. I had to make it myself! I just had to laugh.

I would like to thank you all for all your support. I have a wall full of wonderful get-well cards! I think if you send a card now, I may not receive it. So, please send any further well-wishes to the house. I would like to thank all the people who donated blood or platelets for me. I would like to thank you for your prayers. I would like to thank you for feeding my family over the last 6 weeks and for keeping me in touch via email. Let's thank God for seeing me through this.
love, nance

Today, I received the most transfusions ever. I received three units of platelets (LC59439, LC59430 x 2) and one unit of packed red cells (LC59108.) My doctor is trying to get platelets better matched so that I won't need so many transfusions.

My white cells held at 800! Hopefully, we'll see them bump up again tomorrow.

Casey Connors and Eric Ng stopped by after donating blood. Eric, sorry your veins blew-up on you! Thanks for coming down boys. It was great to see you.

I received two units of platelets today (LC59147 & LC59178).

My white cells went to 800 today! This is the biggest jump so far! Any progression is very exciting for me. I also had a bone marrow biopsy today. (Oh lucky me)

My doctor was giving me some indication of what I need to do to get discharged from this hospital. Here's an example of just a few of those things:
-Higher blood counts,
-I need to become less transfusion dependent (at some point, my stem cells will hopefully make enough red cells and platelets to support me) because I can't be coming here every day for tranfusions,
- I need to take all my medications (antibiotics, antifungals, antivirals, anti-rejection drugs by mouth and be able to keep it all down,
-I need to be eating (no problem there)
-I need to be drinking a certain amount (he didn't say what I can drink... ha ha)

Thank you all for being there for me. You've made this whole process a lot easier.
love, nancy

I received three unit of platelets this weekend (LC59135, LC59154 & LC59178) and one unit of packed red cells (Lc58747).

My white count went up only slightly to 500 where it has hung for the last two days. I hear it is completely normal for my white cells to start off so slowly. I can't believe I've been confined to my room now for 33 days with total hospital stay now of 42 days (6 weeks). I don't know if they can even predict how much longer it'll be but as long as we see forward progression, that will keep me going.

Every morning when my nurse hangs another IV antibiotic at 4 am, I just have to ask what my white count is (they do blood draws at midnight and most often the results are available by 4 a.m.) Sometimes, they are afraid to tell me because it has gone down or stayed the same. Other times they are elated that it has jumped 200. I guess, I'm putting pressure on the nurses. I shouldn't ask them at that hour because if it has risen, I can't go back to sleep.

Mom is still bringing me her award winning O-kai. I think that I needed another flavor with it today, so when the cafeteria called to ask if I'd like to order dinner, I asked them if they made special requests. They were able to make shoyu (soy sauce) & sugar hot dogs. Kurt was laughing at me when I did this, but it came out perfectly and it went very well the my O-kai.

Thank you all for your continued support. Some of you have been coming in weekly to donate platelets or blood. I'm sure it's getting old for you, too. Thank you for your perseverence. Somedays, I just want to be done with the whole thing, but I've come this far and there is no turning back now. Love you all, nancy

I received two units of platelets today (LC59113 x 2) and one unit of packed red cells (LC59043).

My white count went back to 300. I was hoping for forward progression, but, I hear this isn't out of the ordinary. My new stem cells are very sluggish!

I've been fighting fever and chills today so I'm going to keep this short. Thank you all for your support. You are keeping me patient.. (easier said than done).
bye for now. nancy

I received three units of platelets over the past two days (LC59065, LC59047, LC59074).

The past two days my white count has been 400 (normal 4000-11,000). Still waiting for a spark in the white count. My doctor is still trying to help my white count with Neupogen. I haven't been able to leave my room for 30 days now. Come on white count, let's move it!!

I've been very exhausted all day. Sorry for the short blog today. love n

Nancy's white count is still at 300. Today she received one unit of packed red cells (LC58676) and two units of platelets (LC59032, LC59046). This need will continue until her new marrow is producing blood cells at a normal rate.

Brenda at the City of Hope Donor Center continues to set appointments for directed donors for Nancy. She still needs a few platelet donors for Thu, Fri, and Sat. Please call her at 626-471-7171 if you are interested and available.

Thank you to the many who have been donating blood and platelets. Please know that these units are living tissue with a finite shelf life. If Nancy is unable to use your donation, be assured the cells are being used for another City of Hope patient in need.

Scott and Andrew visited today after completing the last day of finals at Cypress High School. Congrats boys!

Mom once again brought o-kai and Nancy once again really enjoyed it. Thanks Mom!

p.s. o-kai is a rice soup. Try it, you'll like it!

My white count stayed the same as yesterday (.3 or 300, normal is 4.0 - 11.0.) We're waiting for it to go up. This could take a while but there is light at the end of the tunnel.

I received one unit of platelets today (LC59023).

I watched sports the whole day yesterday. Phil Mickelson had the Golf U.S. Open the whole day and threw it all away at the 18th hole. That was very hard to watch. Since he hadn't hit his driver well all day, he should have just used an iron and parred the hole to win the tournament. That's what I would have done.... like I'll ever be in his shoes. After that, I watched the Heat/Mavericks game... another disappointment.

Mark brought some home video of the boys basketball games. It's always fun to watch Scott and Andrew on video since I missed the games. They have one more day of finals and then they are off of school. Do well on Finals Boys! love mom

Thank you all for your prayers and positive thoughts! I finally have a measurable white count today! It's low, but it's there. This is a very good sign of things to come. I spent the morning in tears of happiness. Thank God for this miracle.

I received two units of platelets (LC59005 & LC58790) and one unit of packed red cells (LC58626) today. Thank you all for sustaining me with this gift of life for the past 4 weeks. I'll still need blood products until my counts level off in the normal range. This may still take several weeks. My counts will go up and down in the meantime. The nurses told me not to be alarmed if they drop.

Mom brought me O-kai again. Wow, I never thought it can taste so good. I think I'm very sick of the cafeteria menu here. Maybe the Gohan (rice) sparked those Japanese stem cells into action.

Thanks you to all of you bringing meals to my family. I really appreciate your generosity. Happy Father's Day to all the Dad's! love nancy

I received one unit of platelets today (LC58773).

I still have no detectable white count. I never dreamed it would take so long. Most of the nurses say to be patient because it will happen. It's my doctor who is making me anxious. I hope I get some kind of white count by Monday so he'll back off the whole marrow biopsy plan. I prefer to wait just a little longer.

I felt exhausted today. I kept falling asleep watching the Golf U.S. Open (sorry soccer fans!)

I still had no detectable white count today. Dr. Nakamura said he'll do a bone marrow biopsy on Monday if there still isn't a count and possibly request stem cells from the same donor depending on the degree of engraftment. I still hope it doesn't come to that.

I was transfused with two units of platelets ( LC58773 & LC 58759) and one unit of packed red cells (LC58395). Thank you all for your donations. Please know that platelets have a short shelf life so in case your number didn't come up, it went to somebody else in need. Also, when the donor center collects whole blood, they always spin it down to the packed red cells. They almost never infuse whole blood.

Lynny came down today and donated three units of platelets. She asked if she should bring a Sharpie with her so she could draw my eyebrows in for me. Thanks Lynny. : )
Actually, I haven't lost all my eyebrows, but they are very very thin. I knew I should've got that permanent make-up before entering the hospital.

I'm getting so sick of the hospital menu. Since I'm on the low bacteria diet, I asked Dr. Nakamura if I can have O-kai (O-kai-yu) with umeboshi. He laughed and said that would be fine! He encouraged me to also have O-Cha-zuke. So, mom brought me some O-kai with umeboshi. It settled my stomach and was a real treat. Thanks mom. Maybe the Japanese food will kick-start those Japanese Stem Cells!

I received a unit of platelets today (lC58759).

I still have a zero white count according to the labs but there may be light at the end of the tunnel. My doctor indicated that the white count is undetectable but when they used a slide they saw a few white cells! Since they increased my Neupogen I'm hoping that there will be an increase in the white cells tomorrow! This news made my day.

I want to wish my Andrew a Happy 16th Birthday today. Sorry I'm not home to celebrate with you. We'll celebrate your birthday when I get home.

Special thanks to mom for visiting me every day. Also, thank you Mark for coming here every day after work. It's a lot of driving from LA to Duarte then to Cypress.
love you all, nance

I received two units of platelets today (LC58679 & LC58709). My cousin Kevin surprised me today when he called from the donor center after donating two units of platelets. Thank you Kevin for coming all the way over here from San Diego! It was so great to see you.

Well, it's Day 20 and still no counts. I'm confident that we'll get some kind of white count tomorrow right at the three week mark! They are still trying to force the white count with the Neupogen.

As part of his final project for his honors physics class, Scott had to build a boat using only cardboard and duct tape. He and two other pretty big guys got in the boat and had to row across the high school pool. As it turned out, his boat tied for first place finishing in 47 seconds. Half the boats sunk! I wish I were there to see it. I think my friend Tami got most of Scott's race on video. Thank you Tami. Can't wait to see it! Great Job Team Scott!

My doctor really wants to see some blood counts come up. He's insisted on putting me back on Neupogen for the next several days. If we don't see some counts by Monday he's going to do a bone marrow biopsy to check on the engraftment. If he's not satisfied with the amount of engraftment he says he may request more stem cells from the same donor. I'm hoping we won't have to go down that road. I think the stem cells are there, but they are just taking their sweet time.

I received a unit of platelets today (LC58675 - Thanks Lynny!) Thanks to Eileen for donating platelets today, too. It was great to see you! Thanks to all of you who continue to support me.

I still have a little stubble left on my scalp. Kurt keeps threatening to bring his duct tape to take care of the strays.

It's just a waiting game now. We're on Day 19 (post-transplant) and I've been here a total of 30 days. I have not been allowed to leave my room since my white count reached zero about 22 days ago. I know it'll all be worth it in the end. love n

The Neupogen had no effect on my blood counts. My doctor thought he'd keep me on it until he heard that I needed morphine last night to deal with the bone pain. I think we should be patient and let the cells work when they are ready. This should be any day now.

I received two units of platelets today (LC58620 & LC58569).

I haven't been feeling that well all day. My nurse just told me it's from the Neupogen. I'm sure I'll feel better tomorrow.

Early this morning Doctor Nakamura came to check on Nancy. Since today is day 17 post transplant, Dr. Nakamura started Nancy on Neupogene to stimulate the production of white blood cells. Once again, there are side affects, which is bone pain. My dad and I asked the nurse to give mom something for the pain. So the nurses brought morphine. Mom says she feels better, but now she is feeling sleepy. By the way, today she recieved platelets (LC 58620). Thank you for all your supports and prayers.

Love,
Andrew

I had some special visitors today! Janet, Rick and John drove up from San Diego to give platelets and/or blood. They were in the donor center for a very long time, not to mention the long drive involved. Thank you all for making the trip. It was good to see you all! At least you didn't show up with sunglasses on like Kurt did. He wore them to avoid the glare coming off my white scalp!

I received a unit of packed red cells today (LC58104). I received several units of platelets over the last two days. Unfortunately, they were from non-directed donors because all the units donated directly to me weren't ready until this morning. I'll probably get a directed unit of platelets first thing tomorrow morning.

I'm still feeling really good. I'm waiting for my new stem cells to "kick-in." This should happen any day now and certainly by Day 24 (we're at day 16). I can't wait until I have an immune system again. Luckily my fevers are gone and I'm not really experiencing any abnormal complications. Just waiting.......

Thanks to all of you who continue to donate blood for me and also, thanks to all of you who are feeding my family at home. They have not gone hungry at all. love, n

I thought my fever had broken but seems I still have a low grade fever at times. Most of the day I was fever-free!

My head is almost completely bald now. Most of the stubble has fallen out. Kojac would be jealous! My cousin said I just need some of the instant self-tanning stuff on my pale scalp.

Thank you all for continuing to donate platelets and whole blood. I appreciate all of you. love, nance

If you are interested in donating whole blood or platelets, the City of Hope Donor Center phone number is 626-471-7171. Let them know you would like to make a directed donation for Nancy Sakakura. She needs A+ blood and A+ or O+ platelets. Blood donation takes about 30 minutes and platelets take about two hours.

If you would like to send her a card, seal it with tape and send it to:

Nancy Sakakura
6th Floor, Room 135
City of Hope Hospital
1500 E. Duarte Rd.
Duarte, CA 91010

Nancy's email address is: nancysakakura@comcast.net

Thanks for the cards, letters, and emails!

Even though I still have no white count, I did have a good day. They continue to remove some of the fluid retention from my system. As they do this, I feel better each day. I think my fever finally broke! Yeah!

I received two units of platelets today (LC58314 and LC58323). Thank you for continuing to support my habit! Hopefully, in about a week, I won't need quite so many transfusions. The new marrow should begin to function slowly.

Over the last two days, I received four units of platelets (LC58301, LC58285, LC58303 and LC58314) and one unit of packed red cells (LC58025 - Thanks Judy!) Thank you all for taking time out of your busy schedules to donate your precious elixir of life!

I had not been feeling well over the past four days or so. My body has retained a lot of fluids (14 pounds worth!). I began to have trouble breathing, and just moving around the room became a real effort. My lungs ended up taking in some of the fluids. Over the past two days, the doctors have been giving me something to help clear some of the fluids. I can now breathe a lot easier so I feel a whole lot better.

Have any of you gone 23 days without brushing and flossing your teeth? (And yes, I am married to a dentist.) They won't let me brush and floss my teeth because my platelets are too low, meaning, I can bleed very badly from the gums. They gave me this bag of little disposable oral swabs. An oral swab is a sponge mounted on a stick. I get to sponge clean my teeth daily. They also provided me with a special mouth rinse. My mouth is only mildly irritated and I don't have any mouth sores. Most patients can barely talk at this stage due to numerous mouth sores and sores in the throat. But not me, they can't shut me up that easily.

I continued to run a fever all day again. I go from extreme chills to being way too hot. (Is this what menopause is like?) I couldn't get comfortable all day.

I received two units of platelets today (LC58256 x 2) and one unit of packed red cells (LC57983). Thank you all for continuing to donate directly to me. It makes a big difference.

Nancy received two units of platelets today. Thanks to all who continue to take the time to donate.

Nancy continues to deal with post-transplant issues. She has had a fever for two days. Cultures have been negative. Doctors continue to treat her with multiple antibiotics and an antiviral med.

Nancy has felt poorly for two days. Thanks for not calling her cell or hospital room phone. She will return emails when she is feeling better.

There may be days when a new update is not posted on this blog site. Some days are simply no news days.

Thanks for the continued thoughts and prayers.

I was infused today with one unit of platelets (#LC58215) and one unit of packed red cells (#LC57922). I was extremely exhausted today from being up all night with my bloody nose. My doctor changed my parameter for platelet transfusion. Prior to the bloody nose incident, he required platelet transfusion if my platelets dropped below 20. He now requires the transfusion for anything under 30.

I still have no appetite and can't taste anything. This part is not fun because everybody knows how I love to eat.

Last night the nurses gave me a dose of Methotrexate, a medication to help prevent or treat graft vs. host disease (rejection.) Since this is a chemo-based drug, it caused me to go back to having awful side effects such as nausea, lack of appetite and loss of taste buds.

I had a severe bloody nose which lasted a total of 6 hours into the wee hours of the morning. The nurses didn't know what to do to help me. They infused me with a unit of platelets (#LC58211) which helped.

I was running a fever today. The doctors added yet another anti-biotic to my regiment because of this fever of unknown origin.