Update Tues, Nov 13
T minus 1 - the day of rest ! Sam is still quite the fighter. She held her own until 7 pm Sun night when the chemo hit her hard. Her fever spiked to 104, which is better than the norm. Most likely, all her t-cells are dead. T-cells are special lymphocytes that help the body's immune system kill bacteria and other harmful things in the body. Sam's leukemia is t-cell. Only 15% of leukemia patients have t-cell leukemia, the rest have b-cell.
Monday was her last day of chemo (well, I guess she gets a dose of the ATG again today on her "day of rest"). She did not feel good at all Monday (no eating, a lot of vomiting and fevers). When I asked her if she still danced the Nutcracker while doing the blue mouth wash (the one that burns her mouth sores so bad), she said "No, but Daddy played the song from Alladin for me". So, the dancing may be stopped for a while, but, she is still fighting for all it's worth. Sam is something else. I hope Ken & Nancy get some sleep tonight.
Check out this picture...they made her a name badge just like the nurses, so she thinks she is a nurse. Instead of R.N., she put something like P.I.B.M.U. (patient in bone marrow unit). Check out all that hair coming in too !
Update Wed, Nov 14
We made it - DAY ZERO - transplant date. Today (time is still unkown) is the day. Sam is excited and cannot wait for the painless transplant that will take about 20 minutes to 2 hrs. Her transplant is a cord blood transplant. The umbilical cord was donated from NY. The stem cells in the cord blood know to quickly travel to the largest bones (pelvic usually). They will hide in the bone marrow. We hope to see the cells start creating new cells anywhere from 15-42 days. Day 0 thru day 20 will be extremely intense for Ken and Nancy.
Please check out the page I set up (in the pink left margin) called Light a Candle.
Sacred Heart church in Salisbury has a prayer vigil for Sam from 7 am - 7 pm. Please drop in any time to pray.
Sam is pretty wiped now, with fevers rising, then falling. She and Matt did however go to the Cell Mates session, where they made placemats. She was ready to go to bed by 5pm. Hang in there Little Princess !
Update Fri, Nov 16
OK folks, I guess I have to just get to the point about this: Sam can have *** absolutely, positively *** NO VISITORS !!!! The ONLY people allowed in her room are the designated care-givers. This is important. Our bodies can easily fight simple bacteria that survives on our bodies. That could kill Sam !!!! Please be considerate of the family and respect their wishes. Thank you.
Well, I somehow lost the entry I posted for Thurs - day 1. So, I will fill you in today on Fri, day 2. Sam did great thru the transplant. Her blood pressure did spike high and put a few grey hairs on Ken. But, the medications got it down. She played a Barbie Saddle Club game (from her new friend Morgan) during the transplant. Thanks to all the donors for that IBM laptop. And they said she would probably be out of it by transplant day. They don't know our little princess Sam. Anyhow, the transplant took about 30-40 minutes. It seemed like an eternity. Shortly after the transplant, she rested and watched the Wizard of Oz. But then 3 hours after the transplant, she joined some other children for a craft (she chose to bead a necklace). She then danced down the hall to see little brother Matt. Sam and Matt had a ball playing with the K'nex. Nancy and Ken even left for 45 minutes to go eat and celebrate. Sam has been spiking for high blood pressures, which are scary when it happens. She had a great night last night and was getting ready for the terrible mouth care when I called. But, while on the phone with her, they started the morphine to help her get through it. What happens is something horrendous called mucousitis. It goes from the mouth all the way to the rectum. It is now on her tongue today. She has not eaten in about 5 days, but they have started her on the liquid nutrition.
From here, things are expected to get much worse over the next 20 days. But, that's what they have been saying for days. Take a guess at what day you expect to see cell growth. Daddy says day 21. Aunt Cathy says day 24. Matt says day 3. Sam says she will give anyone who guesses correct a big hug and a kiss.
Sam wants 2 things real bad now (1) Grandma's homemade bread and (2) to go outside. She cannot have either. The foods have to be processed a certain way and NOTHING fresh.
Please pray for 10 month old Benjamin who just had his cord blood transplant and for 6 year old Morgan who is still in P-ICU after her transplant last week.
And PLEASE PLEASE donate platelets. You never know when yours may actually end up in Sam. An unplanned event occurred transplant day when she received platelets. She received Grandpa's and it was 100% by accident (well, God knew what He was doing). Please let me know if you give platelets (where, when and blood type) so I can have Nancy & Ken check each time she receieves. Platelet shelf life is 5 days and it gets shipped to wherever they need it most !
And last but not least .... thank you all so much for the prayers for Sam. When 2 or more are gathered, He listens for sure. God is comforting Sam through this - I just know it !
Update Sun, Nov 18
Day 4....Sorry I had to get firm about the visitor thing, but an unauthorized visitor showed up unannounced. This is truly a matter of life and death !!!!!!
Sam had a great day Saturday. She colored, played dolls, played games, sang and rode the bikes down the hall. Poor Nancy was out of breath trying to keep Alice the IV pole up with Sam. Sam said Alice just needs to get faster wheels. And oh how beautiful Sam and Ken were singing. Great video moments for Nancy. The most precious moment of the day was Sam talking on the phone with 3 year old Matt. She sent him a hug and kiss over the phone. Yes, that was a tear-jerker moment.
Medically, she is holding her own. she does have the mucousitis that is now on her tongue. Watching her have to endure the mouth care is really tough. The worst is yet to come. Days 8 thru 20 will get pretty bad (so they say).
Thanks to the church from Raleigh who prepared a nice meal for the 16 families on the bone marrow unit. It was nice to see all the parents taking a load off. Thanks also for the gifts they gave the parents.
Update Mon, Nov 19
Day 5.... and she is holding her own. The mouthcare is getting tougher and there is more vomiting. But, she continues to amaze everyone. She learned how to play chess yesterday. I think it is day 8 with no eating. The IV nutrition is good, but hard on the liver and kidneys.
Things are quite emotional on the bone marrow unit with a child going home, a new one arriving and another released to be with the Lord. I just pray GROW CELLS GROW and hang in there little princess Sam.
Update Tues, Nov 20
Day 6....GROW CELLS GROW ! Sam is showing some little signs that perhaps the engrafting phase is close. She has some bone soreness (chin and "bottom bone"). That is expected. She got an elevated temperature and that is another sign. She beat Nancy honestly in chess yesterday and learned how to play backgammon. Wow. She went on her "walk outside" last night. She wants so desparately to go outside, but cannot. The imagination that Sara showed in the book/movie The Little Princess has really helped pull Sam through this nightmare.
Sam's friend 6 year old Sara Morgan is doing great. Please pray for little Morgan who is still in P-ICU with complications.
Thanks again to my cousin Janice for the Blood/marrow drive in Quincy, MA. There will be a blood/marrow drive in Boone next Mon, Nov 26th. We have enough $$$ to test over 100 people - let's get Sam a perfect match in reserve !!!!!
Update Wed, Nov 21
Day 7... Sam needs some extra prayers now. She has fevers again and has bad bone/joint pain. They went ahead and started her on the pain pump. She has quickly learned how to use it and seems to be managing the pain herself.
Please also pray that all the parents on the bone marrow unit can have a Happy Thanksgiving with thanks for each day of life.
GROW CELLS GROW ... please !!!!!!!!
Update Thur, Nov 22
Day 8... Happy Thanksgiving. We have so much to be thankful for - LIFE, our families, friends, doctors, nurses, hospital staff, volunteers, The Red Cross, Hendick Marrow Program, American Cancer Society, Leukemia Society, Relay For Life, .....
Sam has the high fevers (104.9 +) and a rash .... all to be expected in the engrafting phase. The puking is getting better, at least no more blood. The continuous morphine seems to be keeping her the little girl she is. She is still doing the carafate dance (a dance to the help her take some of her medicines).
Grow cells grow----Please !!!
Update FRi, Nov 23
Day 9.... They said things would get bad and they were not kidding. Hang in there Sam and Nancy & Ken. Sam is as red as a tomato with a rash and fevers (with temp up to 105 +). But.... there is cell growth. Yay ! Her white blood cell count is .1 - it is finally measurable. We pray it really is her NEW cell growth now. Grow cells grow.
Please say a special prayer for Reggie who has a bad infection. Please also pray for the parents who have 2 children going through this now too.
Update Sat, Nov 24
Day 10... What an emotional day. No fevers late friday and all day Saturday. What an emotional surprise to see Sam's condition when I arrived Fri late morning. I had no clue what GVHD did. Sam now has acute GVHD (graft vs host disease). She is showing unbelievable rash with itching. But she was a trooper all day Friday. She sang "Away in a Manager" for Grandma. Still no eating (what is this.. 14 days without eating), but she is sipping water.
By the way, whoever gave A- platelets in Charlotte on Nov 23 ... guess what... Sam got them. Thanks for your gift of life !
Now, today was the emotional day for me. She was an angel early morning as Nancy played with Matt and Ken got breakfast (poor guy got hardly any sleep last night). We played with Disney's newest paper dolls (you guessed it, princess Sam). And then, the high dose steroids hit--- goodness, I never knew a 5 year old had emotions quite so, what's the word, mean. The poor kid could not get comfortable with the itchy eyes. Then, all it took was 1 sneeze to open the flood gates with a bloody nose. 2 hours later, the bleeding (I am talking pouring blood) stopped with the help of platelets (A+...thanks someone).
Please pray for Nancy & Ken as Sam goes thru this GVHD. It's real tough and emotional on them.
Please also pray for Morgan, Sara Morgan and Matthew (all in P-ICU). And also pray for Benjamin, Michael, Brett, Garret, Shannon and Cassie. They all need an extra boost.
The doctor said that we can't really count cell growth until we see .5 Grow, cells, Grow. Let's hope she didn't loose that .1 in today's blood loss.
Update Sun, Nov 25
Just heard from Nancy. Sam is up to .2 on white cell count. Go girl ! Hang in there Nancy. Things were tough early this morning and things WILL get better.
Day 11...I know it will be tough for Nancy and Ken to leave Sam's side now. It seems that if Sam barely rubs her nose, it starts back bleeding. And she can't keep from rubbing as her entire body is a NASTY rash from the GVHD. Sam's tummy hurts pretty bad now too (she has bleeding ulcers).
How I wish God would just comfort Sam a little now and give Ken & Nancy a little break from their emotional pain.
I have not heard yet today about any blood results that could be a result of yesterday's blood loss. Please please keep giving platelets. That's what will help stop her bleeding (from nosebleeds and ulcers). Yes, it's a 2 hour process, and yes it's not the most pleasant thing in the world, but nothing compares to what those little ones on floor 5200 at Duke are going thru. And by the way, Sam got some platelets from St. Paul, MN. You never know when she might get yours from NC, NY, PA, TX, NH, FL, GA, ...!!!!!
Update Mon, Nov 26
Day 12...Good news, cell count up to .3. Things get rougher by the day though. Sam may have the GVHD in her stomach or intestine. Lab results back today will tell hopefully. Sam is on high blood pressure medicine and now insulin, along with 4 different antibiotics. The visit with Matt yesterday was hard on her as she just cannot get comfortable to play like a kid. Matt does not quite understand that. Matt is so sweet, he told Nancy that even when she is not there, and he forgets what she looks like, he has an extra Mommy in his heart. What a brave little 3 year old he is. Not only do Nancy and Ken have to fight this disease, but they have to deal with a split up family too.
There is a blood and bone marrow drive in Boone, NC for Sam. It would be nice to find a reserve exact match for her.
Update Tues, Nov 27
Day 13...Sam seemed to do a little better yesterday and even stayed sweet enough to play with Matt. She even rode one of the bikes down the hall. They are changing all medicines around - even her anti-rejection medications. She may have to have a colonoscopy today. It's not desired as it offers a chance of infection. But, they have to determine if the GVHD is in her gut. It appears so. She is having to get more insulin now too. Let's hope that problem goes away once they can lower the steriods. One thing seems to lead to another.
Thanks so much to all who got a bone marrow test yesterday. I spoke with a fellow who actually was a bone marrow donor to someone. He was very proud. I also got an email from one of Nancy & Ken's neighbors who just donated his bone marrow for someone. It really does work !
Please pray for all the kids on the bone marrow unit at Duke: Samantha, Benjamin, Garrett, Brianne, Shannon, Cassie, Brett, Emily, Reggie, Morgan, Sarah-Morgan, Austin, Ryan, Matthew, Bernard, Brandon. Bernard got to check into his Durham vacation home, so all the kids who felt like getting out of bed got to throw confetti all over the hall at Bernard. What a great celebration. I cannot wait for Sam's confetti throwing celebration. Grow cells grow!
Update Wed, Nov 28
Day 14.... It's official folks REAL CELL GROWTH. She had .5 white cell count today. She is still in tough shape with the acute GVHD. The new cells see her body as something bad, so they are rejecting her. Her gut hurts real bad and that is the sign of severe GVHD. Sam needs lots or prayers still.
Please say a prayer for the family of a little boy named Matthew who went on to Heaven. He sailed thru his transplant and then got a bad case of GVHD in his gut. God, please be with all these kids and their families.
Update Thur, Nov 29
Day 15... Ken won the big hug & kiss from Sam. She is holding her own. Blood sugar levels are way out of control, even with continuous insulin. The new anti-rejection medication is stopped temporarily to get toxic levls in her system down a bit. Sam hurts in almost every bone. We hope that is cell growth - not hers, but the new.
Special prayers to Reggie's family as he passed away last night. It's so hard to meet the children and their parents, then accept whatever God's plan is. Two children going into heaven in one day is a bit much for Nancy & Ken.
Update Fri, Nov 30
Day 16... Sam did a little better yesterday. The report came back and she does have some kidney damage. It is unknown at this point if it is permanent. She also does not want to walk. Her legs and feet hurt her real bad. She begs for the bedpan, but it is best to keep her moving. It feels better to ride the tricycle, so Nancy and Ken are Happy to make the walk vs bike trade-off.
Thanks again to all the balloons for Sam. She gave some to 15 month old Garrett who just has his transplant. Garrett is a little pistol and seems like the energizer bunny.
Several folks have asked about the GVHD. It is Graft vs Host disease. It is where the newly growing cells reject the body. That's rough. The classic sign is a rash on hands and feet with a high fever. Sam had the high (103-106) for days and has the rash on her ENTIRE body. As you go from mild to moderate to severe to life-threatening, things get worse. Sam does have a hurting tummy with nasty stuff in her output. It's all GVHD and reactions to medications. Her blood sugar continues to skyrocket (from the steroids), but blood pressure is coming down.
Please God, show some mercy ! Special prayers go to the new little one on the unit - Charlie, who is now in P-ICU.
Ken is the official winner of the Day 14 Cell Growth guess !! Here he gets his hug and kiss.
Update Sun, Dec 2
Day 18...What a glorious day today. After Saturday's drop to .4, Sam is back up to .58 today. Sam had a good day Saturday (although a little uncomfortable in the tummy). She seemed to hit the pain button a lot. But today, she was so very active. Sam and Matt got to play the new "Disney Princess" edition of Guess Who. Matt was very patient when she hit her brief moody spell. She rode the bike up & down the hall and sang and danced quite a bit. Grandpa, Grandma and Aunt Cathy even got to Hokey Pokey with Sam. Grandpa had a tough time keeping up with the pattern of when to clap singing BINGO. Nurse Donna taught Sam a new 'Grow Cells Grow" dance and Sam sang "Away in the Manger" many times. I think the time out in the hall with the special guests put tears to Daddy's eyes.
Special prayers to the families of Morgan and Charlie who are now free from suffering as they went to heaven Friday. What a tough week... 4 little ones leaving in 1 week. I think this emotional stress is really hard on Nancy & Ken.
Special prayers also for Emily who is going to her apt this week and Brett maybe next week. More special prayers for Cassie in hopes to see her cells grow soon. And boy, that little 15 month old Garrett is the energizer bunny. He loves Sam and goes by her room about 10 times a day calling her "Mam".
Please keep the platelets coming. Sam got A negative from Charlotte on Friday and Saturday. It's the greatest gift of life you can give now !!!!
Update Mon, Dec 3
Day 19.... Sam is doing good. Her white blood cell count did however drop back to .4 - that up and down is to be expected for a while. She had school today (in her room) and a visit from Matt. One of Santa's elves arrived in the hospital room and at the apt. Sam was quite concerned that Santa would not know where she is now. The cutest thing she told me last night was that Christmas is really about Love, Hope and Hugs. This comes from the heart of a 5 year old who has been showered with gifts the past 4 months.
Thanks again to all involved with Balloons for Sam. She loves them. I think all the balloons in her room is why 15 month old Garrett seems to love to journey down to Sam's room.
Come on cells... grow faster !
Update Tues at noon, Dec 4
Day 20...Cell count is back up to .6 - Grow cells. Sam had a pretty good day Mon. The nurses set up a water fight. They have to use sterile water for the kids and the kids use their used (cleaned of course) medicine shringes. I am not sure who has the most fun, the nurses, the kids or the parents. I understand Chuck (a parent) really soaked the nurses. What a great break from the daily stress for all the parents.
Sam created a new joke: What is Santa Clause say when he arrived on the bone marrow unit ? Grow, Grow, Grow ! Not bad for a 5-year old. Kidney and pancrease tests are showing good news. Her belly and bones still hurt a lot and the mucousitis is back full force in the mouth. You cannot say the words "mouth care" in the room, or Sam WILL start crying. Instead, you say MC (which she just starts pouting at). Thanks so much to Bonne Bell lipsmackers for the burned lip care. I think she has about every flavor now. Her nutrofil count is zero, meaning she could not fight off the slightest germ. Emily was supposed to go home today, but she got an infection. Go away germs !
Hearing from the folks from Hendrick yesterday reminded me that they need a plug. The Hendrick Marrow Program has been so awesome in helping with the bone marrow drives and helping Nancy & Ken. I heard something on the radio about a raffle they are having. Please visit their website by going under my links. They follow and checkup on Sam all the time. Who knows, she could end up one of the Hendrick race car drivers. Watch out Jeff Gordon !
I am off early this morning to give platelets (hence my late Mon night actually updating the web).
Update Wed, Dec 5
Day 21...Cell count .7 ----- Yay ! Her legs were hurting pretty bad yesterday. Sam got blood and platelets yesterday too. She does not do as good these days as she has to take lots of medicines to prevent reactions. Sam and Matt had a great time at Cell Mates making crafts. Sam had a great visit from her special nurse at Brenner Children's hospital where she was prior to Duke. Miss Jeannie came in as a reindeer. Sam's BP was high again. She decided to let the bed go down lower so the nurse would have to take the blood pressure down low (and of course that would make the blood pressure lower !). Quite a sense of humor for a 5 year old.
Please pray for Sara Morgan and Michael who have the GVHD bad. Yay for Benjamin on cell growth and yay for Cassie on no more leukemia.
Update Thur, Dec 6
Day 22... Great news, Sam's cell count is 1.0 ----yay ! Sam had a good day yesterday. Alice the IV pole is getting too slow to keep up with Sam. Good news, they have taken her off all antibiotics, are weening her off the pain medication and are taking away 6 hours of TPN (the liquid nutrition). The hopes are that she can leave the unit in a few weeks and check into her apt. I must remind folks that Sam is still in isolation. This becomes even more critical as she is taken off the antibiotics. She still has NO immune system. Once they leave the unit is when the real hard work starts. They will be leaving early each morning for the clinic and spending all days clinicing. The amount of care is so unbelievable.
Sam is eating the platelets. Yesterday, she had platelets in the morning and at night. I wish her body would hurry up and make more cells...Grow Cells Grow. As soon as I get word today on the cell count, I will update the website.
Also, there is a FREE bone marrow drive this Sat at the Red Cross at Park Rd in Charlotte (8:30-2:30). It is in honor of a Charlotte firefighter who lost his 6 year battle with leukemia. They never could find a match for him. I am so thankful that cord blood stem cells can be used on children now. I hope and pray that one day they figure a way to save adults that way too. In the meantime, please get on the National Marrow Registry if you are not already. I met a guy from Boone, NC who was a donor to a lady 8 years ago. He brought and album of when they 1st met. How proud he is to have given life ! Thanks.
Update Fri, Dec 7
Day 23... Sam's count is back down to .8. That is to be expected though. Her tummy and her legs still hurt. The nasty blue part of Sam's mouth care is being elimated. The emotional stress from that medication is just not worth the medical benefit of it. Thanks to Lori Yang for donating platelets to Sam in her son's honor. Sam is being kept alive now by your gift of life.
Sam BP stills remains way too high, and medications have been changed added. She is still needing period boosts of insulin in addition to her continuous insulin drip. But, she got to get completely unhooked from Alice the IV pole for a little while last night. She danced and twirled and twirled. She also ate 1/2 of an orangle slushee. She keeps saying she wants a rainbow snowcone. All food ingredients have to be pre-approved as she has a special pre-processed diet. She even has to have special milk.
Anyhow, special prayers go out to Sara Morgan who still struggles in P-ICU with the severe GVHD in her stomach. And special prayers to Shannon who has had trouble breathing. For Benjamin and Garrett who are showing some cell growth. And an extra special prayer to the Mom who has 2 children on the bone marrow unit (a 6 year old girl and a 4 year old boy- wow!). They too are from Salisbury, NC. I pray that each family will have some peace on earth for Christmas.
Update Sat, Dec 8
Day 24... Sam really had a pretty good day yesterday. She was free from Alice the IV pole for about 1 hour. She dances all over the place when she is free. Nothing seems to help the belly pain, except diverting her attention. Sam is the entertainer of the hall -- she sings, dances and just lifts everyone's spirit. And all that is done with quite a bit of significant pain. How special this little one is. Kids just want to be kids. The GVHD seems to be back again, as she has the rash and other signs. But, she is trying to eat - she tried 3 bites of mashed potatoes. Nancy is preparing herself mentally for the rollercoaster ride again.
Please pray that God will give Sara Morgan some relief for her GVHD as she struggles in P-ICU. And that Shannon can breathe easier and that Cassie can show some signs of acceptance of her transplant.
Update Mon, Dec 10
Day 26... Sorry for no update Sunday, but the long drive to Duke and then all day in the hospital all weekend really wears on Aunt Cathy. Oh, the good news --- cell count is up to 2.8....Grow cells grow !!! With this growth comes the GVHD a little more. As Sam is growing more cells, her body continues to be battling with itself. She has the GVHD rash a little more. The belly still hurts and the BP is way out of control. But, Sam is getting more time free from Alice the IV pole. She was free for about 5 hours yesterday. She played hide and seek and ran and danced and bowled and rode the go-cart. And then sang the tear-jerking "Away in the Manager".
She had platelets already this morning and has to get some whole blood this morning too. She really really feels bad just before she needs blood. But, boy does she feel better when she gets it.
It looks like Sam may just get to check out next week. Nurse Nancy learned how to draw the blood samples and to hook Sam back up to the IV. When she checks out, they will have to clinic most of the day and then hook up to the IV for 12 hrs per day. Sam may get a 4 hour pass to go visit the apt this week. She cannot wait to go outside. She's been in Duke for 32 days now. The rules will be no school, no malls, no stores, no church, no place with children and she has to wear her mask everyplace, except in the apt. Anything is better than being stuck in the hospital.
Special special prayers go out to Sara Morgan, Michael and Shannon who are not doing well now. Little 10 month old Benjamin and 15 month old Garrett were free from their IV some today too.
As for Ken and Nancy, they need special prayers now too. The long hard days and nights day after day after day after day just take their toll. I sure hope they ALL get to use Make A Wish one day ! My heart goes out to the entire family. I was in tears watching poor Ken being so very patient with Sam trying to get her to take her nasty tasting blood pressure medicine. And the same when Nancy had to make her do mouth care. Sam pleads and begs not to take the terrible stuff and then questions how much longer. I think that's when tears come to Nancy & Ken too. And this happens only about 4 or 5 times each day now !
Update Wed, Dec 12
Day 28.. Sam's count is 5.1 today. She was sleeping sound this morning, out on pain medication. Nancy said Sam's gut was hurting pretty bad. We keep praying it is not the GVHD. Hopefully she will get to go home for a while today too. She had to get platelets when she got back last night. Sam and Matt were angels playing together shoulder to shoulder all afternoon yesterday. Then when it came time for Sam to go back to the hospital, Matt got pretty angry. The poor little guy just does not know how to handle Mommy and Sam leaving.
Please pray that 6 year old Sara Morgan can get thru her GVHD. She remains in P-ICU. And the prayers are working for 17 year old Shannon who is breathing better. Benjamin and Garrett may get to go home either this week or next. Grow cells Grow on 5200 at Duke !
Update Tues, Dec 11
Day 27.. Sam's count is 2.7 today. But good news, she got a 4 hr pass home. Nancy said she ran out of the hospital and never stopped smiling. Sam and Matt spend hours setting up the manager. Nancy sounded like she was smiling from ear to ear too. Some of her liver numbers came back bad, so they did some GI testing. Nancy seems to notice a pattern that when Sam get's whole blood, her liver numbers come back bad the next day or 2.
Update Thur, Dec 13
Day 29....Sam did great yesterday. She has the leg and gut pain, but never complains. She is convinced that exercise makes the cells grow. It's working too. We should all take a lesson from a 5 year old. She is trying hard to eat. They are thinking now of when she goes home, taking her off the TPN (liquid nutrition via IV). She is still on BP medicine, insulin and high dose steroids via IV. They did the genetic test to see if the cells growing are hers or the donor cells. I pray they are the donor cells.
Grandma LaMarre was in tears yesterday as she watched her own daughter (Nancy) having the joy of watching Sam and Matt play so well together. Matt really hurts so much for Sam. For a 3 year old, he has really done well handling all this.
I must remind everyone that Ken and Nancy cannot break any rules in regards to Sam's health. This means that NO ONE is allowed to visit Sam even at the apt unless they are one of the designated caregivers and have followed the caregiver protocol. We have come this far by the Grace of God and still have another hard 6-8 months ahead. Please Please Please do not put Nancy and Ken on the spot for one's own selfish needs. When the doctors say Sam's immune system can be turned back over to a normal life, there will be a giant celebration of life and everyone will be invited. Thanks.
Yay for 11 month old Benjamin and 16 month old Garrett who are going home today. And yay for Shannon and Sara Morgan who are doing better. Cassie is the one who needs special prayers, as she may start this whole process all over again. 4 year old Omavi and 6 year old Brianna both also from Salisbury, NC need special Grow Cells Grow prayers.
Update Fri, Dec 14
Day 30.. Sam's count was 5.9 yesterday. And best news of all, the results came back showing that 100% of the new cell growth is donor cells. Yay, the transplant took. Now, Sam has to fight infections until there is T cell growth, which will be quite some time. This means her blood type has changed from B+ to A+. Sam got platelets yesterday, maybe Grandpa's as they were AB+ from Charlotte.
Sam gets very emotional and weepy when her counts drop as she nears needing whole blood. She was that way yesterday. Those are the hardest days for Nancy, Ken and Matt to deal with. She wanted to change her own caps on her central line, but it's a sterile procedure that Nancy has to do. Sam was quite emotional.
thanks so very much for the great nurses who care not only for Sam, but for the parents. Nancy got to eat her dinner only because Andrea (Sam's nurse) gave Nancy a break. Sam wants to take Andrea home with her, and so does Nancy.
It's looking like Sam is checking out Monday. Please please please God, let it be a reality.
Special prayers for Cassie and Sara Morgan. Yay for Brianna who shows some cell growth. 14 year old Julie has started her transplant procedure too. Please keep all the platelets rolling for all these kids who depend on YOUR gift of life.
I have updated Sam's address to the apartment address, so check out that page.
Update Sat, Dec 15
Day 31... Sam's count was 7.7 yesterday. She only needed BP medicine once and blood sugar is looking a little more in control. For the 1st time in about 37 days, Ken, Nancy, Sam and Matt sat at the same table to eat a family meal. It seems trivial to the average person, but to a family so torn apart it means so much.
Sam has 2 questions for the doctor yesterday - can she ride her own bike and why does Cassie (the 19 year old) have to have another transplant ? I am sure Sam will always wonder when she will be 100% better. Cord blood transplants have proven successful for ages under 12. My hopes are that Cassie and Shannon will prove to the world that the older kids have a chance too.
It's so nice to see happiness for the Washko's. Keep it up Sam and in a year or so, we can all look back on this glorious miracle. Aunt Joni and Aunt Cathy were discussing how much we realize that Sam was meant to live and spread joy. After all, Sam was a miracle from the beginning.
Update Mon, Dec 17
Day 33.... Sam checked out of the bone marrow unit yesterday after 38 days in the hospital. Yay. Her white blood cell count was a 10.something. There is still a lot of recovery ahead. She generally needs platelets every day and blood every other day. She takes 17 medications a day. Nancy is about a full-time nurse with Sam. She has daily blood samples, flushing the lines, sterile dressing change and of course the IV meds every day. The hopes noe are for no infections, as she has no t-cells yet. And we hope that Philadelphia chromosome was blasted away too.
Update Tues, Dec 18
Day 34... Sam's WBC count was 13.5 yesterday. They had quite a long day. Nancy got up at 6:30 to start medicines and procedures. They did not get home the clinic until 6:30 pm ! Sam's nurse visted the clinic to be with her, how sweet. Believe it or not, Sam is a little nervous being out of the hospital. I think she knows that this procedure gave her life again and it's still a touch and go situation. Sam has learned that in order to lower her blood pressure (so she does not have to take the terrible medicine under her tongue) if she lies real still, closes her eyes and thinks about the low BP fairies that she can actually lower her BP. Adults need to learn a lesson about relaxing !
I spoke with Matt at lunch yesterday and he told me he is so happy to have his family again when he wakes up each morning. I know he is still quite jealous of Sam and all the attention she gets. I really want to thank everyone who has remembered Matt. After all, he is only 3 and should not have to understand all this. And thanks to my parents and Ken's parents who have really been a blessing to Nancy & Ken.
Special prayers go out to Shannon and Sara Morgan who struggle daily to live. And Bless Cassie who had her 2nd transplant yesterday. And for the brother/sister team of Omavi and Brianna - hope your cells GROW !
Update Wed, Dec 19
Day 35... Sam's WBC was 14+ yesterday. She did get platelets. Thanks to Grandpa LaMarre and Susan Allen for donating this week. Aunt Cathy is donating this weekend. Yesterday's day at the clinic was not quite as long. Sam and Matt got to go to Cellmates at the Rainbow Day clinic. When Sam goes to clinic, she is put in an isolation room with glass doors. She has lost a little wight, but that is because she is off IV nutrition and trying to eat on her own.
Nancy is the one who needs some extra prayers now. She has so much to do with all the medical care, clinic time and then trying to spend time with Matt.
This is cute... Nancy was telling Sam and Matt a story while giving Sam some IV medicine. Matt started making up a story of a reindeer with no hair because he had chemo. Sam asked what kind of cancer did he have. Matt responded neuroblastoma or maybe leukemia. Can you believe that for a 3 year old ? Little 16 month old Garrett who has touched our lives has neuroblastoma.
Please say special prayers for 6 year old Sara Morgan who's GVHD has gotten worse. And Shannon moved into Sam's room, so hopefully those Grow Cell Grow fairies can bring Shannon some luck.
Update Thur, Dec 20
Day 36... Sam is doing better each day. Her chemo tastebuds are starting to dwindle. She is exploring more food like rice crispies and ham. Thank God for the Grandma's who are helping with food and cooking. Sam is still on the neutropenic diet - meaning all foods must be heavily processed. The sugar levels are getting more in control and same with blood pressure. There is a concern now with her hearing - she may possibly being experiencing a loss. That can happen with the medications she has had. It's so sweet how happy she manages to stay. She did not have to get blood or platelets yesterday.
Pray each day that God's angels will watch out over all these kids, especially the ones battling much harder than Sam. Cassie, who just had her 2nd transplant, can't wait to get out and go to clinic to hear Sam sing.
Update Fri, Dec 21
Day 37...Sam's WBC count is 16.something now. She did great at clinic yesterday and did not need blood or platelets. She did fall in the parking lot while trying to dance and run at the same time. Good thing her platelets were ok. She will be getting some platelets and maybe blood today.
This is cute. When I spoke to her about 1:30 yesterday, Nancy had taken Matt for a nap and was reading a Christmas story. Nancy fell asleep, so Sam finished reading the book to Matt. Sam giggled so hard when she told me.
This is cute too. Sam and Nancy were reading the "Me and My Marrow" book. Sam came up with another joke. What kind of GVHD (graft vs host disease) is the prettiest ? Sam says acute GVHD. There is acute and chronic. Get it ... a cute ! She definitely has quite a sense of humor.
She wants to go outside and play so bad. But especially on windy days, molds and fungus spores are in the air. The kids have a real hard time recovering from fungal infections. So for now, Sam will just have to accept being out of the hospital as the best thing.
Bless all the children going through this terrible procedure, especially Cassie, Shannon, Sara Morgan, Ryan, Pheonix, Michael, Julie, Brianna, Omavi, Benjamin, Garrett, Emily, Brett, Bernard, Austin and all the other children who endure so much suffering. And god bless their siblings and their families too !
Update Tues, Dec 25
Day 41... What a Christmas present for me - to have Nancy, Ken, Sam and Matt together at home all day. Sam is really doing great. We have been so blessed. She is so full of life and really truly appreciates it. Her belly still does hurt and she has joint and bone pain. But, she is eating good, singing, dancing and playing like a 5 year old should. Tonight, she gave a show on the birth of Jesus. She told the whole story of the birth of Jesus and sang appropriate songs. Matt was to be the shepard, but got too interested in his Bob the Builder lego set.
Ask Ken about his Christmas cooking. Too bad I did not think to get him a fire extinguisher ! Grandma came to the rescue with baking soda.
Thanks to the folks from Hendrick Marrow program who brought gifts while Sam was on the bone marrow unit Saturday getting IV meds. They were so gracious to think about Matt too.
Continue the prayers that Sam can get along stronger each day. I praise Nancy & Ken for doing all they can to protect against germs and infections. What a job those 2 have trying to live life normal. It is by no means normal still.
Oh, I must tell this story. Someone gave Nancy & Sam a food gift at the clinic. On the way to the parking garage, Sam saw a man she thought looked very hungry. She asked Nancy if she could share her food. Sam was so overjoyed to offer the homeless man the gift of food. They said he wolfed it down on the spot. Sam was so overjoyed that she helped someone who was hungry. You see, she has recently read "The Little Princess" and loves the story. What a heart of gold this little one has !
Her WBC is 19.something. Really, you multiply that by 1000 or 10000 I think. That actually puts her white blood cell count higher than normal....but, white blood cells (which fight infection) are composed of several types of cells. She is still neutropenic, which means she actually does not have ANY infection fighting cells. And, she still does not have any infection fighting T-cells. Mold and fungus spores are apparently the worse for her body to get now.
Sorry I did not update for a few days, but I spent the past 4 days helping out the Washko's - and what a busy schedule. Of course I got to play Santa's helper by wrapping for Nancy & Ken for hours and hours. I am worn out and ready to ski tomorrow.
Please say special prayers that the biopsy little 5 year Brett has tomorrow will not reveal the GVHD. And special prayers to Sarah Morgan, Shannon and Cassie who struggle so much daily. And then bless all the other little ones - Garrett, Emily, Kevin, Brianna, Omavi,Ryan, Sydney, Austin, Benjamin, Julie, Michael and I know there are many others.
Update Thu, Dec 27
Day 43... Sam's WBC count is now 23. They are cutting back on the medication used to promote the cell growth. So, her count is expected to drop a good bit. She will probably get blood and platelets today as she has gone 2 days without them. That sure is a good sign. All the medications are draining her magnesium level. That causes muscle cramps, messes with insulin, can cause heart problems.... She seems to stay quite emotional prabably from the steroids. And when it comes to taking the medications (all 17 of them), she gets quite adult-like when Nancy pushes her to take them.
Poor little Matt is so insecure now. He gets quite mean to Nancy & Ken, perhaps his way of lashing out at them for leaving him all the time. I pray that the next 60 days in Durham will go by real fast so the Washko's can get back to at least a little more normal family life. But for now, it's off to clinic all day every day.
Skiing is awesome and it's been snowing all morning ! And that reminds me, there is a your lady from Boone, Kathie Billing, who was inspired by Samantha to run a marathon, raising money for the leukemia and lymphoma society. If anyone would like to contribute, please let me know and I will get you additional info. Thanks Kathie !
Update Fri, Dec 28
Day 44... Samantha's count is 25.2. That is great considering her cell growth med was cut in half. She received platelets yesterday and had a bad reaction to them. She had quite a moody day yesterday. That's caused my all the medications. When she is moody, watch out, she is mean and nasty - yes, our sweet little Sam. Poor Matt is so patient with her during these times too. Since she can "get away" with it, Matt thinks he can too. Poor Nancy & Ken.
Please keep those platelets rolling...it's what is keeping Sam and all those other kids from bleeding to death.
Update Mon, Dec 31
Day 47... Samantha's WBC went up to about 27 and back down to 25 after they cut the cell growth medication in half for the 2nd time. Her magnesium stays low, so the medication for that causes pretty bad diarrea. She has "graduated" from every day at the clinic to just M-W-F, yay !!! Ken & Nancy were by themselves this weekend with no help for the 1st time in about 2 months - a real family again. I can't wait until day 100 when they may get to move back home.
As we roll into the new year of 2002, I pray that each day will be a continued miraculous day for the Washko's. I ask that each and every person reflect on their family and health. Also, consider making a commitment to various organizations that have helped the Washko's get where they are today - American Cancer Society, Leukemia & Lymphoma Society, American Red Cross, Hendrick Marrow Program, Cord Blood Registry are just a few. Or maybe consider getting up a team for your local ACS Relay for Life; my Team's name is Samantha's Rainbow and everyone is invited to join my team in the beautiful mountains of NC. My hope is that Sam can join us that day in June too to walk under the rainbow balloon arch I am planning. Saving just $5 (or even $1) each week CAN make a difference in someone else's life !!!!!! Or consider sending a balloon to each child on the bone marrow unit. It's amazing how those balloons helped Sam's spirits.
I send out special prayers to all the kids of Duke's PBMTU 5200. I hope the cells grow and the one's who are really struggling can have an especially happy new 2002. And Sam, I am so proud of your fighting spirit ..... you are my hero and inspiration !!!
Update Wed, Jan 2, 2002
Day 49.... Happy New Year to all. Samantha is running a fever which can be a scarey thing at this point. I pray it is not her central line or a major infection. Hopefully, we will find out today. As much as the kids would like snow, I pray they do not get too much over the next few days. I heard that some areas around Raleigh may get as much as a foot ! They do not have the means to keep the roads down that way too clear. And, I don't think the kids have all their winter wear in Durham now.
Update Thur, Jan 3, 2002
Day 50... Samantha has made it to half way there. The WBC is 28 now and that is with the cell growth medication really cut down and getting it every other day. I hope they can make it to the clinic today to get the IV meds and maybe the blood if she needs it. She seems to be going 2 days before needing platelets now. Thanks so much to those who keep giving and recruiting. What a blessing you are !
The IV antibiotics seem to be helping the fever. They have to get back 3 negative cultures before being "clear". She was real tired yesterday and even uncharacteristically took a nap. That may be needing whole blood.
Thanks to the Salisbury Academy for the box of books. Sam is so excited to be reading them and especially excited to place them in the school library herself. This 5 year old is amazingly reading at the 2nd to 3rd grade level. She can read words like "throughout" without hesitation ! She certainly takes after her parents (maybe her Aunt too !).
Nancy has her list of questions daily for the doctor and so does Sam. She started weeks ago asking questions about playing in the snow. She can as long as they do not get down to the dirt/grass. So hopefully Durham got the 8" they were calling for - and hopefully it all fell in the yard and not on the pavement. She can't do any sledding because with low platelets, they have to be careful with bumps and bruises.
Matt is so happy to see Mommy and Daddy home more. He gets real sad when Daddy has to go back to work though. He is growing like a weed and is just as smart as Sam. He is truly a Tigger. He NEVER stops bouncing around. When I spoke with Nancy the other day, they were playing soccer in the kitchen with a empty water jug. They played until Matt almost fell asleep on the floor.
I hope to get some Christmas pictures on the web soon. I am staying busy with work and having to ski.
Update Fri, Jan 4, 2002
Day 51... Sam, Matt, Nancy and Ken had a great time in the snow. They could not make it to the hospital because of the snowy roads. Ken managed to make it from Salisbury to Durham. Matt loved that since he's an outdoor little guy and Sam just cannot hold up that long. Thank goodness the snow was depp enough where they never got down to the grass/dirt while playing. Sam's mask actually helped keep her face warm. Even Grandma Washko got out in the snow to play.
ken will get them to the clinic today. Sam gets her 2 hr IV med and may need blood and platelets. When she needs blood, she gets grey, tired and cranky. She usually has to get benadryl before blood products since she has had some bad reactions to some.
Nancy said she actually had moments yesterday of no thoughts about leukemia, cancer, infections, transplants, germs and death. Instead, all she thought about was pure fun. Kids love to have fun and Nancy is just a big kid. How I wish all those other families on the bone marrow unit could experience the little break Nancy got yesterday.
We are in for a big snow this weekend and I heard the Raleigh/Durham area is to get more too.
Update Mon, Jan 7, 2002
Day 54... Sam is holding her own. Her WBC went down to 8 on Saturday, but is back up to 18. They have cut the cell growth meds though. She is wiped out and tired a lot. But they are also lowering the point where they transfuse her (blood and platelets) to make her body do some work. She is also starting to get the dark bushy eyebrows. That is a common side affect of some medications, and they will eventually fall out. They have really been enjoying getting outside in the snow. Sam is a bit jealous that she cannot go fast sledding down their little hill. But with a low platelet count, she can bleed easily from the slighest bump. But, thank goodness she is at least outside playing in snow. Who would have guessed this soon.
Ken and Nancy still live with the fear that the GVHD could hit her harder, that she could get an infection and worst of all that some leukemia and Philadelphia chromosome cells are lingering and hiding causing a relapse. The fact is, she is in God's hands and He has a plan for this little one.
Thanks again from our family to all who have helped. Thanks especially to John Zerger for raising money and doing a 24 hr "marathon", for Kathie Billings of Boone who is doing her 1st ever marathon in Sam's name for the Leukemia and Lymphoma society, for all those who have helped with bone marrow testing, Hendrick Marrow program and all who have donated blood and platelets. That not only helps Sam, but lots of other children. One day we can repay everyone with the biggest celebration of life party with none other than Sam as our guest on honor.
On a personal note, I have been skiing and snowboarding and enjoying staying outside where no germs can get at me. I'm working a little part time job at the ski slope to help raise $ for American Cancer Society Relay for Life, Hendrick Marrow Program and Leukemia & Lymphoma Society. Life is great !
Update Tues, Jan 8, 2002
Day 55... Sam's body is showing signs of what has really happened to her. She is so tired lately that she cannot even eat. By the time Nancy dresses her to go to clinic, she falls asleep. She even fell asleep while riding the elevator to clinic. This could be from the lowering of the steroids, the low hemoglobin (they have lowered her number as to when she gets blood) or it could be a delayed reaction to the high dose radiation or even a side affect from the anti-rejection medication. Sam is normally a high energy one ALL day. She stopped taking naps at 18 months old.
Matt is growing up. The poor little guys told Nancy that he has no friends. They have made a choice to isolate him so he can be around them. Maybe folks can consider sending Matt some friendship cards ! He sees his Mommy and Daddy spending so much time with Sam and all conversations are about Sam. Thanks to Pat (the hospital assigned best buddy for Sam) who gets down to play with Matt too. And the cell mates program is good, because he gets to interact with the kids (all wearing masks though). I pray that one day, Nancy, Ken, Sam and Matt can be a normal family again.
We just take too much for granted in life !
Update Wed, Jan 9, 2002
Day 56...Sam is holding her own. She slept until 11 am yesterday. Nancy said that Sam woke up long enough to do her job of cleaning her lumens (3 ends of her central line) with alcohol and then handing them to Nancy before falling back to sleep. She still puts up her fight about the orals medicines (about 10-12 different pills and liquids). She has this routine of crying "why don't you understand me" and "Pleeeeeese Mommy, I'm not ready yet". Nancy has the same answer every day "I know hunny, you are right, I don't understand. Just take your medicine when you are ready". Then Sam just takes everything like a trooper - nasty taste and all.
They did not have to go to clinic yesterday, but will today. Matt surely enjoyed having Mommy home all day. Nancy said he was just the sweetest little angel all day. He is so funny how he has certain things he loves to do with Grandma Washko and certain things he loves to do with Grandma LaMarre. How lucky Nancy & Ken are to have such wonderful parents to help out.
Sam is very very tired all the time now. The doctor reminded Nancy "she just had a major transplant". But, it's strange how she flew through this transplant with such spirit and spunk and now suddenly, she is so drained. She did however dress up like Mary Poppins yesterday. She loves dress up.
Special prayers go out to 17 year old Shannon who needs a miracle. She had her transplant about 70 days ago. All they can do for her is pain management. And 6 year old Sarah Morgan still battles as all they can do at this time is experimental medications for her severe GVHD. And Cassie has been battling the high fevers up to 106.9 for several days now. It's really hard on Nancy & Ken to get so close to all these families (the parents share a common bathroom, shower, kitchen and meals). They are the only ones who can really understand the reality of what their children are going through. They form quite a bond and they want to be there for each other.
I pray also for all the other kids - Garrett, Benjamin, Brett, Omavi, Briana, Ryan, Kevin, Emily, Syndey, Julie, Austin... that somehow medical science can increase their chances.
Update Thur, Jan 10, 2002
Day 57... Wow, I cannot believe it is day 57. Sam's WBC is down to 8.1. But, remember, they have cut down on the cell growth medication and they are hoping to see her body start doing some of the work. She is still very tired and sleeping a lot.
Special special prayers for Nancy who is really having a tough time with getting the medications from the company the insurance company is making them use. They send the wrong stuff and take forever doing it. And Ken needs the prayers too, as Nancy kindof takes it all out on him when he calls. Matt needs the prayers too, as being locked in this bubble is really affecting him too.
It's so hard to understand how God can be so cruel, especially to some of the families. Little Kevin had his transplant a year ago, and he is now back in the hospital from a fungal infection that has paralyzed him. And 17 year old Shannon is now in a coma with failed kidneys & liver. It is quite a constant reminder at what COULD happen to Sam at any time. I must remind everyone to respect the family's "anti-germ" policy.
Update Fri, Jan 11, 2002
Day 58... Sam continues to hold her own. Her WBC jumped up to 18.1. Her Hemoglobin is still low, but no blood and platelets again yesterday. She has a lot of diahrea and bone pains. But they did get to play at the outdoor playground for a while yesterday.
I am heart-broken as I am sure Nancy & Ken are at the loss of 17 year old Shannon who was in the room next to Sam on the bone marrow unit. Shannon was on day 72. She is now free from cancer and pain and is in peace in Heaven with God. My prayers go out to Shannon's parents Jerry and Rose and their 2 other daughters. I will always remember the cheer that Shannon's singing and dancing Santa brought to the little ones on the bone marrow unit.
I am not sure if any of you have ever seen one of those St. Jude's specials on TV. I have and have cried all the way thru them. For me, what is happening to my little niece is a St. Jude's special coming to life. Never in a zillion years would I believe it's this real. I never knew emotions so strong and never knew tears so big. I hope everyone can just take a few minutes away from their life and thank God for the blessings you have and say an extra prayer for those who are suffering.
Update Mon, Jan 14, 2002
Day 61...Yay, Sam reached the 1st major milestone, day 60. The hopes are that they will soon get a weekend "pass" home. She is holding her own and guess what, it looks like her body is strting to really make it's own platelets. And even whole blood. She does still seem lethargic. But inbetween her lethargic stages, she has a little energy. Get this... she rode her bike down to the playground Saturday. She did just sit and watch Nancy, Ken and Matt run around the tennis courts at the apartment. You should see Nancy wipe down the entire playground (slide, steps, hands, ....) with alcohol 1st though. She is losing a little weight, as her tummy is hurting a lot and she has a lot of diarhea still. Each passing day bring joy and hope and the reminder that Children are truly a gift. Have you hugged yours extra specially hard today ?
Please keep on giving the blood and platelets for these kids. Thanks so so so much.
Update Tues, Jan 15, 2002
Day 62...Sam is doing ok. She is really now making her own red blood cells. Her platelets are dropping, but slower. Her thumbnail is about to fall off again. It's wild how the delayed reaction to high dose chemo and radiation is. She will probably lose all her nails again. It doesn't bother her any more after the 1st time losing all her nails back about 4 months ago. They think the sleepiness and being lethargic is something called somulence syndrome (from the high dose radiation she had). It could last several months, hopefully not long-term. She just falls asleep while playing or eating. They are also adding an all night IV magnesium. But, they are dropping the steroids, the high blood pressure medication and the cell growth medication. I guess you take the good with the bad each day.
They were promised a few day pass home, but with what's going on now, it looks like the pass home will be a while yet. Personally, I would go awall !
Sam's nurse from the bone marrow unit visits Sam on her days off - isn't that amazing. The nurses love these kids so very much. Sam is so cute because Andre (one of the male nurses) is her Prince Charming and she has a little girl crush on him. He went a visited her in clinic yesterday and gave her lots of hugs and kisses.
Ken is doing an awesome job working and helping at the apartment with cooking. I just hope they have the Durham fire dept. on alert !
By the way, this weekend, Kathie Billing from Boone, NC will be running her 1st ever marathon for the Leukemia & Lymphoma society in Sam's Honor. If anyone would like to contribute in Sam's honor with a card going to Nancy & Ken, please let me know. I also read that a gentleman named Mark from Raleigh, NC is running in memory of 17 year Shannon Zollars who left the bone marrow unit last week and is now free from the her pain and suffering and is in heaven for her eternal life. Please help find a cure !
Update Wed, Jan 16, 2002
Day 63...Sam seems to be holding on to her own red blood cells and platelets better now, meaning she is making what she is using. Sam definitely is not herself now though. She will have some bursts of the normal energetic Sam. Them she stares out into space and goes to sleep. She even forgot that she had seen Andrea (her primary nurse on the bone marrow unit) and Andre (her Prince Charming nurse). She also does not show much interest in her normal activities. I can see why Nancy is worried. Poor Matt keeps getting his Mommy time taken away by time Nancy has to spend on the phone trying to get medical supplies and dealing with learning the new all-night IV machine Sam is being hooked up to at home now. So once again there is no let up on the prayers.
I send out special prayers for Cassie who is about 30 days after her 2nd transplant and no sign of cell growth yet. I pray that the parents of all these kids can keep up their strength and sanity.
Update Thur, Jan 17, 2002
Day 64... What a rollercoaster ride Nancy & Ken are having. Yesterday was a day off for clinic, but they were told to come in to do testing to make sure Sam does not have some kind of infection going to the brain. Sam's behavior has been so uncharacteristic. And with all the infections hitting the other kids, there is lots to worry about. They decided to hold off on the spinal tap as Sam seemed a little more like herself. She even had her kindergarden class and played. She did fall asleep eating dinner though.
On the up side, her white blood cell count is up to 12.5 and even better, her hemoglobin (red blood) is up to 9.2 and her platelets are climbing up. Thanks to Dannette Mixon, her sisters and nieces for making the special trek to give platelets for Sam.
A special prayer needs to go out to teenager Brandon. At day 60, his bone marrow test showed he accepted 99% of the donor cells. At day 100 his test just showed his cancer is back. He's trying an experimental drug and yesterday he told Nancy "Just so I can have a little more time for a month or so." These cancer kids are something else.
Please everyone, take a few moments out each day to thank God for your health and say a pray for all those who suffer so dearly, from the child who is sick to the parents who suffer just as much..
Update Fri, Jan 18, 2002
Day 65... Wow, I cannot believe Sam is this far along already. She is doing much better and even back to her old self. She ate 2 bowls of cereal yesterday and made gifts for Matt. Matt loves teasing Sam only so she will cry. I guess it's a little boy thing. Sam is getting back to her responding to Matt phase again. She worked on painting the wooden clock that will go on the princess castle headboard for her bed that Grandpa made with such love. Nancy too has been painting the detail.
Thanks to all the folks who have supported the organizations that help all these cancer kids. Nancy was telling Sam about Kathie Billing running a marathon for the Leukemia & Lymphoma society in Sam's honor and Sam said she is going to run a marathon one day too. And I bet she will !
YAY...SAM IS MORE LIKE HERSELF. STILL SLEEPY BUT PAINTING AND PLAYING AND DRESSING UP. HOPEFULLY WHAT IS GOING ON IS THIS SLEEP SYNDROME FROM THE RADIATION OR JUST A BUILD UP FROM ALL THE MEDICATIONS OR THE GLUCOSE LEVEL.
Update Tues, Jan 22, 2002
Day 69... Oh, God is so good. All the prayers are being answered and Sam is really doing good. They do not have to be back to clinic until Thurs. She is making her own blood cells and may NEVER need red blood cells again. She is making her own platelets too. The white blood cells (that fight infection) are made up of all kinds of stuff (neutrofils, leukocytes, t-cells, b-cells,....). They are starting to see some of these numbers changing. The hope is that by day 100, she will have 25% of her immune system back.
Soon, they will get a 3 day pass HOME, yes home. I must make everyone aware that absolutely NO VISITORS will be allowed to the Washko home during these passes home. The ONLY persons allowed are the designated caregivers for at least the next 6 months !!!!! This is to give Sam the best possible chance at life. This rule is NOT meant to be broken. Matt too remains in isolation so he can remain part of Sam's every day life. The day will come when we will have a big party inviting everyone to see Sam & Matt.
Update Wed, Jan 23, 2002
Day 70... There is so much to be thankful for today. Sam is really doing well. She is getting her energy back. What a trooper she is. On the daily dressing change, Sam wipes her line caps with alcohol and flushes her own lines. She understands about not letting the air bubbles in too. She has had to learn to do things that even adults never thought about. She was so brave again the other day when they had to access her port. When she was 1st diagnosed, they surgically implanted a port-a-cath in her chest so they could access her viens without constant IV's. Then when they found out about the transplant, she had to get a central line that allows 3 IV's at 1 time. So now she has both. Even though the port is not used now, it is a great backup and must be flushed every 30 days. They have even said that if the central line were to get infected (which it would not since Nancy is so meticulous with cleaning and accessing it) that she could probably get by with just her port.
Wow, the most awesome news for 6 year old Sarah-Morgan, she is getting a pass to go home. Little Pheonix got a 2nd transplant and is showing signs of engraftment. Baby Ryan got to go home. Garrett gets passes to his home home in SC. 14 year old Julie is getting ready to check out. Special prayers to Cassie who is on day 95 waiting for cell growth, Kevin who struggles for life daily, Emily who is having seizures and Brett who has the stomach pains (GVHD). These are all kids who have had quite the battle.
Update Thur, Jan 24, 2002
Day 71...Sam is doing good. Today is clinic. Hopefully, all will go so well that she may get a pass home home. Again, I remind folks - please do not go by their house, it is off limits for at least the next 6 months ! Sam was quite shakey all day yesterday. That is neuropathy caused by a drug called FK506. I think that's a graft vs host disease drug or anti-rejection med.
Grandma Washko has been doing what she loves most with the kids - reading. Nancy said she has so much patience to read for hours. That goodness for these 2 awesome Grandmas.
Thanks again to Kathie Billing running the marathon in honor of Sam. Sam said once again yesterday that one day when she runs a marathon, it will be for a little girl and her family too. My hope is that the money raised will one day make it so families will NEVER have to be in this situation.
Please pray for 8 year old Kevin Situ and 21 year old Cassie who struggle so much now after a long hard road since their transplants.
Update Fri, Jan 25, 2002
Day 72.. Sam is having a great day today. She slept in real late and did not even start breakfast until after 10 am. Each day is such a wonderful blessing. It is such a shame that Nancy & Ken cannot let into the pleasures of every day life though. Their life is a far cry from normal. To all Sam's relatives, please be patient, there will be a day when everyone can hug and squeeze tight. Until then, pease continue to pray for Sam's health and peace for Nancy, Ken and Matt. God is listening !
I think God also listened to the prayers for Sam's 6 year old friend at Duke, Sarah-Morgan. Sarah-Morgan has turned the corner and got a 4 hr pass out of the Bone Marrow Unit. If only something good could happen for Cassie, Kevin and 2 yr old Sydney.
Update Sun, Jan 27, 2002
Day 74... Sam is doing good. When I spoke with her yesterday, she was filling out a card to get a Ranger Rick Magazine. Sam & Matt cannot get enough of reading. Nancy says Sam is resting so good at home in her own bed. She says it's weird being home though. They are still trapped inside their little bubble. They are back to Durham again tonight for the week. Let's hope and pray for another pass home. It won't be long until that magic day 100.
My heart aches so much for the parents of 8 year old Kevin Situ who is in his 4th day in a coma. He had his transplant a year ago, but got an infection. Also, poor Cassie battles, waiting for her cells to grow after her 2nd transplant. For anyone who has not gotten a bone marrow test, please please do so. There are 2 bone marrow drives set for Boone, NC in February. Cassie so desparately needs her match. We have to feel blessed that Sam is young enough to have a not so perfect cord blood transplant.
For those who wonder why I mention all these other kids all the time, well, they have become Nancy & Ken's family. They share a bond that most folks will never understand. It's also very hard for Nancy & Ken to share that bond and then be part of the other family's loss. I pray that God will continue to give the Washko's all the strength they need to get through this nightmare.
Update Mon, Jan 28, 2002
Day 75...Sam is back in Durham and I hope all her blood counts and various chemical levels will allow another pass home. The kids really had a great time getting home. Sam was even running up and down the stairs. I remember before the transplant when she was so weak and tired on all that chemo and radiation that she could not make it up the stairs. That seems like just last week. What a long road they have been down. Home is home, but it's still so hard for Nancy & Ken. Nothing is normal for them and there is always the wonder of when it will be over and WILL it be over. Sam is trying various foods. Nancy had the kids as such health nuts, that Sam keeps asking when she can eat all her favorites - raisins, carrots, yogurt... These foods will be off limits as they may contain germs that her body cannot yet fight off. Weird, huh ? We eat foods that contain germs, but our bodies can fight those germs off. How healthy is this healthy food anyhow !
I have to share this. 8 year old transplant patient Kevin has been in a coma 6 days now, and it seems he is showing signs on a more positive now. Wow. 6 year old Sarah-Morgan is so miraculously getting passes out of the hospital. Maybe just maybe:
But those who wait on the Lord
Shall renew their strength;
They shall mount up with wings like eagles,
They shall run and not be weary,
They shall walk and not faint.
--Isaiah 40:31
Update Tues, Jan 29, 2002
Day 76... Sam is really doing great. Her white blood cell count is way down to 7.9, but that was after 3 days of being off the cell growth medication. She is doing GREAT growing her own red blood cells and platelets. No transfusions in a while. Please keep giving, there are many other kids who need. I have to share a wild story here. Yesterday, I gave blood. I am really underweight to give, but I am healthy, active and have no problems giving. After giving, I went to the ski slope, just to work in the ski shop. 2 hrs later, I took off the dressing they put on the needle hole and replaced it with a band-aid. I was standing in the cafateria line to get dinner and a friend came up from behind me, grabbed both upper arms and squeezed hard and long. By the time he let go, I was as white as a ghost and my shirt sleeve was soaked in blood. The needle hole actually opened up and blood was squirting out. Fortunately the other ski patrollers were still in the lodge to help me out. Who would have ever believed this would happen. So, Aunt Cathy gave her share of blood yesterday !
Back to Sam. Her hearing checked out good yesterday and she may just have to live with the ringing and beeping in her ears (from radiation). She has started growing hair - according to Nancy. Ken is still looking thru the magnifying glass for those hairs. Sam continues to amaze me at her reading and learning skills.
Pray for another wonderful day !
Update Wed, Jan 30, 2002
Day 77...Sam continues to remain healthy each day. What is healthy in this case certainly is a far cry from normal. Most people do not understand how serious this matter still is. I hope they are able to still get more passes home. On that note, I ask folks to please do not visit the Washko's until we give the ok. It's so unfair to put Nancy into the shoes of having to say NO. She has other problems to worry about. It's also unfair to Sam to have to look thru her bubble. It makes her sad and cry to not be normal yet ! Nancy really appreciates all the help, support and prayers.
Sam has had the shakes real bad. That is caused from the high levels of the FK506 drug (anti GvhD) medication. Her liver is working OT with all these medications. Good news is that she is off IV steroids and being weened off. The hope is that within 3 weeks, she will be off steroids. Her 100 day is scheduled for Feb 18 (actually that's less than 100 days). We will need all the prayers we can get asking that she is cancer free.
On another note, 8 year old Kevin remains in his coma, not getting better or worse. Imagine hoping for a miracle, but being pushed to plan your child's funeral ? That is what Kevin's parents are going thru now. Miracles can happen, so his family needs prayers too. And baby Ryan needs prayers after having a stomach wrap. Sarah-Morgan continues to keep getting better. Cassie is trying so hard for cell growth, Emily is trying different foods and showing more emotions finally, Garrett is doing so awesome with his passes home. Austin and Sydney need special prayers. 14 year old Julie is at her apt and doing great. What all these pediatric bone marrow patients go thru is so very hard on their families and on those little bodies. Remember to give blood and platelets especially to help keep them alive.
Update Thur, Jan 31, 2002
Day 78... Sam is doing so great. She had more bone pain in her legs yesterday, but she, Matt and Nancy played baseball. Well, they actually play t-ball. Sam and Matt are quite the sluggers. This is so amazing, but I remember the day after Sam had her central line put in thru her jugular vein, we were out playing baseball. She is so very amazing.
I have to share some other sad news. A 21 year old friend of mine from Boone,NC (who is a student at App State) was diagnosed 2 years ago with leukemia. In Sept, she finished her 2 years of chemo and has remained in remission. 2 days ago, she found out her cancer is back and she needs a bone marrow transplant. Please pray that one of Ivette Rubio's sister's will be a match for her.
I ask a special favor. The Leukemia & Lymphoma Society has a very successful school program called Pennies for Patients. If anyone knows of a school that might be interested, please let me know as soon as possible as that program kicks off in Feb. It's such a great way for kids to save pennies and really make a difference for someone. Thanks.
Please say special prayers for 8 year old Kevin who remains in a coma, for baby Ryan who just had the stomach wrap, for 4 year old Omavi that he can get out of the bone marrow unit soon, for 2 year old Sydney and 21 year old Cassie that they can please please see cell growth. And a powerful prayer for Quinton.
Sam - we love you !
Update Fri, Feb 1, 2002
Day 79... Sam continues to do well. Her legs hurt a lot, but that is from the cells growing in her marrow and bouncing from higher than normal growth (from the growth cell med GCSF). Her WBC count is down to 10 (just a little lower than normal).
He gives power to the weak, and to those who have no might He increases strength. Isaiah 40:29
Special prayers need to go for Cassie, now showing no cell growth, 4 year old Omavi from Salisbury, baby Ryan, 8 year old Kevin who remains in the coma, 2 year old Sydney, 5 year old Brett who continues to have GvHD in his stomach and especially for 15 year old Brandon who now has his leukemia back after having his transplant in Oct. This is a constant reminder that God is the one and charge and whatever happens is His will.
Update Mon, Feb 4, 2002
Day 82....Wow, Sam is on home stretch toward day 100 when she may get to go home. She is doing so good. She seems to stay busy with all her crafts and reading. Nancy says Sam will have Matt reading in no time. Matt is only 3 and he is working on his spelling. That little guy has really had to grow up fast and understand so many things adults don't ever experience. Sam has something that we hope is just a blood blister. Nancy cannot wait to get it checked at clinic today. Every little thing out of norm brings along the fear of "is it cancer" or "is it an infection".
Special prayers for Cassie, Brandon, Kevin, Sydney, Ryan and Omavi. It's also so great to hear how good some of the DPBMU (Duke Pediatric bone marrow unit) 5200 kids are doing - Garrett, Benjamin, Julie, Brianna and Sarah-Morgan will hopefully be going to her apartment soon. Miracles happen every day.
On a side note, after being 70 degrees last week, winter is back in the NC mtns will snow and really really cold. Skiing was THE best yesterday ! I cannot wait for the day when I can teach Sam how to ski.
Update Tues, Feb 5, 2002
Day 82...Sam is really doing good. Her blood counts are doing so well that they are taking her off the GCSF (growth cell stimulating factor). They are also taking her off the BP medication. As long as she is on the FK506 (GVHD med), she will continue the overnight magnesium IV. Good news - They don't seem too worried about the growth that looks like a blood blister. The prayers and awesome Doctors and Nurses at Duke work miracles !
Special prayers go to the family of Quinten who is now free from pain to begin an eternal life in Heaven. Please also pray for Cassie. Great news yesterday as her marrow test she is really really accepting 68% donor cells. Her battle now is the fungal infection in her lungs. 8 year old Kevin and 15 year old Brandon need some very special parayers now, along with Sydney, baby Ryan and Omavi. Sarah- Morgan may miraculously check out today ! She is the 6 year old who had her transplant the week before Sam and "taught" Sam about total body irradiation. We must all count our blessings daily. And please please give platelets !
