Day + 21 - Going Home!

Michelle is going home tomorrow – Thursday February 23^rd!  The good news doesn’t stop there either.  Shelly’s white blood count is almost to the low end of normal.  Her counts are coming up and they look fantastic!  She still has a lot of healing that needs to take place and must be really careful until mid-May to not be around any sick people.  There is nothing like returning home after a vacation, I’m sure there will be nothing like returning home after a months stay in the hospital.

Here are her counts for the last several days.

	Monday 2/20	Tuesday 2/21
WBC	1.33	1.81
HGB	33.8	33.1
PLT	227	264
ANC	.7	.9

The throat is beginning to show signs of improvement.  She has been off of the nutrition supplement for several days and she is eating ok for everything she has been through.  Shelly continues to exercise everyday by riding the stationary bike and going for walks in the corridor.  She’ll miss the stationary bike, but it will feel good to go for walks in her yard. 

You have accomplished hard things Shelly.  There will still be hard things to come, but the road is definitely getting smoother!

Day +16 - Encouraged!

Shelly's numbers are looking almost normal, normal for a healthy person!  This is so encouraging! 

WBC: 1.01
Hemoglobin: 10.1
Platelets: 165
ANC - .6

All the doctors can't speak highly enough about her progress.  The morning was a bit shaky.  Literally.  Shelly's blood sugar was a little whacky.  No doubt this is due to the intravenous nourishment and now the added real food.  The intravenous nourishment is going to be dropped to half tonight, allowing her body to rely a little more on real food.  Another encouraging achievement is not only that she is eating but she is keeping it down too.

Today she had orange juice, 1/2 a bagel, lots of m&m's, a popsicle, 1/2 an ensure drink, and she also took a small pill by mouth.  Shelly sat up in a chair for over an hour and went for a long walk.  Her naps are decreasing which I also look at as a good sign of recovery.  I'm sure as she moves back home and is taking on more activity, her naps will increase too until she regains all her strength again.

Michelle's goal is to move home next week.  Something she is working very hard to achieve and looking forward to with much anticipation!

Keep going Shell!  You ARE doing great things!

Day + 14 and +15 - The Road That Leads Home

Shelly’s blood levels are changing.  Here are the counts for the last few days.

	2/13/12	2/14/12	2/15/12	2/16/12
White Blood Count	.11	.29	.47	.74
Hemoglobin	10.1	9.5	9.7	9.5
Platelets	47	42	72	116
ANC	0	.2	.3	.4

ANC stands for Absolute Neutrophile Count.  This number needs to be at .50 for 2 days to be considered total engraftment.  Her platelets definitely have engrafted and all the other numbers are looking good.

Yesterday Shelly was feeling a bit improved with energy.  She pedaled on her bicycle for a few minutes and she went for a walk down the hall and back all on her own.  The intake of food has been a bit more of a challenge.  Yesterday she had a half a popsicle.  The goal is to increase the food intake.

Goals for today are a bit more exercise.  I don’t foresee that being a problem.  Eating food.  Hmm…nurse Camille suggested to Shelly today that she order one of everything, try a bite, if she absolutely couldn’t eat it, then throw it away.  She needs to try a bite of something every time she received anti-nausea medicine.  That would be four bites more than yesterday.  At breakfast this morning Shelly ordered an English muffin and scrambled eggs.  I was so proud of her!  Before I left the hospital for work she had eaten ALL of her English muffin and had taken about five bites of the scrambled eggs.  I’m anxious to check in to see how the rest of the day has gone.  Nevertheless, she has accomplished great things today. 

Release from the hospital is on the horizon.  There are just a few things that need to take place before she can move back home.  1)  No fever, so far she has not had one, and probably won’t get one so this is not to much of a concern.  2) Swallow pills on her own, she’s working on that.  3) Eat about 500 calories.  You and I may think that seems like not a big deal, but this is probably her biggest obstacle.  4) Her ANC level needs to come up to .5 and remain there for 2 days.  Dr. Wei is sure she’ll hit that tomorrow, so again, this is not a problem.  There are also things that need to be taken care of at home to ready the house for her.  It needs to be completely dusted from top to bottom and sanitized.  We’re working on this one as well.  I can’t believe Shelly is getting to the point of looking towards home.  She has done hard things and is on her way to recovery.  The road ahead will still be slow, but it is possible!



Dr. Wei and Michelle



Shelly eating breakfast this morning!



Day + 13 - ENGRAFTMENT!

It's official.  She's engrafting!  This means the bone marrow transplant worked!  This is the best Valentine's Day EVER!  Dr. Wei said her numbers are definitely coming up.  Tomorrow they will double, by Thursday they should reach 500 and continue to double every day on out.

Michelle has been a miraculous patient to the doctors.  She is only their second patient to never have a fever and get some sort of infection.  Even though she had the CDIFF, she never had an infection.  Most patients retain 30-40 lbs. of water because of diminished kidney and liver function.  Shelly hasn't retained any water at all, meaning her kidneys and liver have continued to function properly.  She is still throwing up, but that is due to the mucous in her throat and the sores.  It is still very difficult for her to talk.  However, with the numbers coming up, each day she will improve and be able to fight off infection and all these things will begin to heal.

Tonight she has a Valentine's Date not only with Steve, but Dr. Wei said he'll be joining them since he has no date and she is his favorite patient.  Thank you for your prayers.  I know this is why Michelle has had miracle upon miracle bless her life these past few months.  The final destination has not been reached yet, but it is in sight.  I believe in miracles.  I believe in angels, and I believe in the power of the priesthood.  All these things have been evident in Michelle's life over the past several weeks!  Happy Valentine's Day Shelly!  This is one I know you will not soon forget!

Day +11 and +12 - How Low Can We Go?

Just when you think you cannot go any lower, guess again?  Shelly received her last dose of immunosuppressant last night.  She has now had four of them to help prevent graph versus host.  This would be so much worse than what she is experiencing now.  We were so hoping that she would not have it because we knew it would give her more sores and that it did, but I guess it is still better than the alternative.  Today she has no voice left because her throat is covered in sores.  For the first time Michelle asked for pain medication last night.  Unfortunately it made her sick, causing her to throw up, making the pain worse.  This is definitely among the top hardest five things I’ve watched someone go through.  If you know anything about me, then you know this is very difficult.

Dr. Wei has already been in today.  He is still hopeful that tomorrow will be the engraphtment day.  Her WBC came up from .07 to .14 today.  We’re just waiting for the neutrophils to begin showing up.  WAITING!  The Deters are not known for patience.  This is truly teaching us patience and that all things are in the Lord’s time.  He reiterated that even though Michelle feels “her” very worst, she is still ten times better off than the other patients on the floor.  Steve and I talked about that this morning, if this is what Michelle is going through, we can’t imagine watching the suffering of the other patients.  It tears my heart up to watch my beautiful sister suffer so much. 

Usually when I arrive early in the morning she is at her best, feeling somewhat rested from the previous night.  This morning she sleeps.  Hopefully she will rest well today and tomorrow will come quickly.  I love you Shelly Dawn.  Tomorrow, the sun WILL come out tomorrow!  Gotta hang on til’ tomorrow…

Day +10 - Things to Pray For

Spending the morning with my sister is always such a sweet time.  It breaks my heart to watch her suffer so much.  Both doctors today complimented her on how well she's doing.  Michelle and I both though, "if this is good, what do the other patients look like?"  Grateful that she isn't categorized as doing bad.  However, she is suffering and I wish that we could take away some of that for her.  So I plead with the readers of this blog to pray for a few specific things and if you would like to join her family in fasting, it would be appreciated.  Specifically that her complications and suffering with the CDIFF would heal, the sores in her mouth and throat would subide, but most importantly that engraphtment will take place very soon.  Dr. Wei is hoping for engraphtment by Tuesday.  Cross your fingers...we are hoping for that to.

Engraphtment really is the answer to cure all the suffering.  Once Michelle engraphs the sores in her throat and mouth will heal, the diarrhea will subside, her energy will return along with her appetite.  She is one tough lady.  Shelly has been offered pain medication to help ease her suffering, but she isn't taking it.  I commend her for her decision.  Watching her, I know that what she is experiencing is extremely painful and must seem like the tunnel is never ending.  I see the tiny pin hole at the end of this tunnel.  I know that if Shelly can have the strength to endure just a couple more days, she too will see the light.

Her blood count today remains similar to that of yesterday.  WBC: .07, HGB: 7.7, and Platelets: 30.  Normally Michelle would not receive a blood transfusion until her HGB reaches 7.5, but late this afternoon her doctor ordered the transfusion for today instead of tomorrow.  A platelet transfusion usually isn't given until it is below 30 so she will probably receive platelets tomorrow.  Both of these transfusions will help the time pass for Michelle because the accompanying Benydril will help her sleep.

As I left the hospital today I reminded Shelly of our favorite pig and spider.  She is "terrific" and to keep her "chin up."  I love you Shell.  You can do it, I believe in you!

Day 9 – CDIFF and HATS

I think the WBC have finally reached bottom today.  Michelle’s WBC is .07, HMT 7.9 (probably a blood transfusion tomorrow) and Platelet 44 (she received platelets twice yesterday).  Her doctor is hopeful that Tuesday we will begin to see engraphtment take place!  WOOT WOOT!

The sores have really started to be a big inconvenience for Shelly.  She began with just a couple under her tongue, unfortunately she has several in her mouth and her throat is covered.  This makes it very difficult to eat, so she’s back on the popsicle diet and ice chips diet.  There is time for eating later when the sores begin to heal.  Go white blood cells!

Another complication arose today.  Shelly has CDiff.  She has likely ingested spores from her stay in the hospital.  The bacteria were introduced into her colon where the normal gut flora was destroyed from the chemo and now her gut has become over run with clostridium difficile or CDIFF.  CDIFF causes bloating, diarrhea, and abdominal pain.  Just more of what she was already experiencing.  The hospital staff is monitoring it closely and is staying on top of it.

Mom is going crazy making hats to keep Shelly’s head warm and stylish.  Cameron wanted in on the action so when he went for a visit this morning he took his hunting cap.  When she wears it no one can see her (ha ha).  Mom has found a great pattern to make soft knit hats.  If anyone is looking for a service project we would be happy to share the pattern.  The soft knit hats are more comfortable than the crocheted hats.  The crocheted hats tend to be a little scratchy.  The pattern is quick and only costs approximately $5 a hat.

 

Day 8 - Music Fills the Soul

White blood cells dropped to ZERO today!!  That means the only place left to go is back UP!!  Her blood levels had all dropped significantly low today.  She had another transfusion of platelets, but her red blood cells remained low as well even after the transfusion yesterday.  This really marks the lowest day so far.  We are hoping for an immediate graph so that everything will begin to climb back up.

Yesterday Shelly felt up to eating.  Remember, she needs to eat 500 calories to have the nutrition tube removed.  So, returning to food by mouth, she ate half a chocolate shake and some fries.  Not necessarily the healthiest, but high in calories.  Too be honest, each time I tried calling Shelly today I was unable to reach her so I am not up to date as to whether or not she ate.

Tonight I enjoyed going to a concert at Bountiful High School with my daughter Karina.  90% of the songs reminded me of Michelle in one way or another.  You see, my childhood memories are flooded with images of Shelly and I sitting at the piano, her playing while we sang hours of duets.  Music has always been a huge part of our family; anything from musicals to church music, to pop.  My love for the Carpenter's is directly related to memories with Michelle.  By the end of the concert tonight Karina was ready to bolt.  At first I thought it might be because she didn't want to be seen with her mom, but then I realized how swollen my eyes were and how much snot was still dripping from my nose (I'm not a pretty crier), and realized that YES she did not want to be seen with her mom because she was a TRAIN WRECK.  I haven't been to the hospital since Tuesday and it is killing me that I have not personally seen how Shelly is improving.  It gave me a glimpse as to why you, the readers of this blog, continue to read.

Shelly has battled two and a half weeks in the hospital.  Hopefully if all continues to go as planned, she will be in her home in another two weeks.  Half the battle has been won.  I know she can do it.  I know that it has been a physical and an emotional roller coaster for Michelle.  I have talked of her bravery and courage, but even I realize that there may have been moments when she did not feel very strong.  Several time as I have entered her hospital room Shelly had the Mormon Tabernacle Choir playing softly, or she was enjoying a musical on the television.  I know she has chosen these types of entertainment because music fills the soul.  I dedicate the words of the following hymn to Shelly to give her strength through the coming weeks and days.

Where Can I Turn for Peace?

Where can I turn for peace?  Where is my solace?
When other sources cease to make me whole?
When with a wounded heart, anger, or malice,
I draw myself apart, Searching my soul?

Where when my aching grows, where when I languish,
Where, in my need to know, where can I run?
Where is the quiet hand to calm my anguish?
Who, who can understand?  He, only One.

He answers privately, Reaches my reaching
In my Gethsemane, Savior and Friend.
Gentle the peace he finds for my beseeching.
Constant He is and kind, Love without end.
-Emma Lou Thayne-

Hugs to you Michelle.  The Savior is ALWAYS with you!

Day 7 - One Week Anniversary!

Today marks the one week anniversary of the bone marrow transplant!  I’m so grateful to be at this point in the fight and recovery.  Little by little I can see the progress Michelle is making.

Tender mercies come in all varieties.  Yesterday was the day we all knew would come.  Even though we’ve watched Shelly suffer through chemotherapy and be so sick, somehow it all became so much more real.  At 12:45 pm yesterday, the sweetest nurse shaved Shelly’s quickly falling out hair off.  The tender mercy was this.  Michelle had just finished receiving a platelet transfusion and a hearty dose of Benadryl.  So the event that could have been a little emotional was instead a nice groggy little slumber.  Steve was quick to take lots of pictures, of which will never be posted for the public, but rather kept for a quiet memory for Michelle to view later.  I stated in an earlier post, “bald is beautiful.”  And that, my sister is, BEAUTIFUL. 

Following the hair cut, I helped Shelly get showered.  She completely woke up with the water on her back.  Shelly touched her hair and said "huh, so this is what you do while I'm sleeping."  Her sense of humor continued to be evident while placing the soft cap on her head:

"Robyn, be careful." 

I replied, "why Shell.  Is your head sensitive?" 

"No, your messing up my hair."

I love this sister of mine!  She is wonderful and continues to keep me laughing!

Her WBC continues to decline.  This IS a good thing.  We want them to crop to 0.  Once it reaches 0 the bone marrow transplant will go in and do its thing and graph, and begin rebuilding those white blood cells.  A few more sores have developed down her throat and of course the sores in her mouth are still there.  All this will go away when the WBC begins to climb again.  Today she received a red blood cell transfusion.  This will help her perk up a bit.  In fact, her appetite might be returning.  Let’s cross our fingers.

Day Six - Doing Hard Things

Most of us woke this morning to our regular routine.  Perhaps a quick work-out at the gym, home to get the kiddos ready and out the door for school, then off to our chores.  Simple things.  More and more I am grateful for my regular little routine as I watch my sister concentrate on more serious matters.  With each day as her blood levels drop and the bad cells die off making room for the good "super cells" from her brother, Michelle deals with things such as fatigue, nose bleeds, mouth sores, and hair falling out.  Shelly has made every effort to keep her mouth clean avoiding sores that can sometimes follow the chemotherapy.  Unfortunately today she found a couple of small sores in the bottom of her mouth.  She'll continue to follow a good oral hygiene regime to avoid additional sores. 

We are grateful to know that the chemotherapy did it's job killing all the fast growing cells in her body.  This became evident as she awoke to hair covering her pillow and shirt.  This was again illustrated after she washed and combed her hair.  The nurse will be in a little later to give Shelly her final hair cut, or rather, shave her head.  Bald is beautiful!  Today I believe this more so, for I know that bald truely means the chemo did its job.  Those cancer cells have hopefully been eradicated along with the good and ALL the bad. 

The Lord has continued to bestow His tender mercies on Michelle through this whole process.  Each day as the doctor comes in to check on Michelle, he tells her she is doing AMAZING!  I believe he is really telling her the truth.  She has avoided many of the side effects or complications that sometimes follow the treatment she is undergoing.  The minor things that have come up have been quickly been placed under control. 

I have felt privileged to observe Michelle doing hard things.  She is honestly so strong and with each passing day she gets stronger.  I am so proud of her.  I love you Shelly.  Thanks for allowing me to be part of this time with you and teaching me so much of courage, strength, hope and faith.

Day 4 and 5 - Low Point

I really do feel bad that I don't post a new story every day, but there really isn't much to tell from one day to the next.  The doctor came in this morning and commented to Shelly that she is doing really well for day plus five.  This is the week that her blood levels remain on a steep decline as her cells continue to die from the chemo.  Let me illustrate what I am talking about.  The day Michelle entered Huntsman her blood levels were: White Blood Count (WBC) 2.48, Hemoglobin (HGB) 8.0, Platelets (PLT) 132.  Today her blood levels are: WBC .26, HGB 8.1, and PLT 28.  Keep in mind, she had a hemoglobin transfusion last Thursday and a platelet transfusion yesterday.  What this means is that the chemo IS doing its job and killing everything in its wake.  Shelly is at her lowest point this week.  When the numbers start to come back up that means the bone marrow transplant is graphing.  It will all be worth it when that takes place.

We ask that there be absolutely no visitors this week due to the fact that Michelle is a really critical point in her healing process.  We're grateful for everyones concern, but please help us keep her safe.  Bone marrow cancer is slightly different than other cancers.  It will be a very long time until Shelly's immune system is strong enough to fight even simple little things.  She will be limited to the types of foods she can eat and won't be allowed to leave the confines of her own home for a very long time.  The healing process for MDS is crazy, but in the long run so well worth it. 

Update on Gerald, he is feeling so much better.  He returned to work Saturday morning and attended church on Sunday.  Prayers have been answered!

Day 2 and Day 3 - Waiting

This is the period of time where we just wait.  Wait for the blood levels to slowly continue to drop, wait for the blood levels to come back up, wait to leave the hospital, wait to feel better... and the list goes on - WAITING.

Yesterday was an okay day.  It started off the same as the last few... feeling blah.  Shelly had great company though to help take the edge off of the blah day.  Steve's sisters Debby and Rosemarie spent the day with Shelly.  It was another day of making goals and setting out to achieve them.  She showered, went for 2 walks, ate but didn't keep the food down so much.  Brushing her teeth is not exactly a fun experience.  Those darn gag reflects are not easily controlled at this point.  The late evening brought on another round of nausea, thank heavens Steve was with her.  There wasn't anyone scheduled to spend the night with Michelle, so after Steve watched her get sick, he decided to make a bed on the couch. 

Today has brought on another day of goal setting and achieving.  Shower, check, they rest are yet to be conquered.  Shelly's heart today longs to be elsewhere.  Her thoughts and prayers have been with Cindy Lowe and her family.  She would love to walk through Zach and Melanie's house to see all the changes taking place there, and of course the luxury of being surrounded by those she loves in her own home.  Soon Shelly, soon.  Just a little paitence and a short time of waiting and then you will be able to enjoy every second of life again. 

Day 1 - Update

Michelle has accomplished all three goals as of 4:00 pm today.  Shower, check.  Walk, check.  Eaten and kept the food down, check! 

Stem cells need to just work really hard and do their job!  Shelly's doing great.  Keep the prayers coming, along with your comments of support and encouragement!

Day 1 - Goals!

We've made it through the transplant and her Re-Birthday!  This morning Shelly is getting a blood transfusion which is normal considering the chemo that she has been through.  She is making such huge improvements today.  As I walked into the room today she was sitting up in her bed and had a huge smile of greeting for me.  Smiles have been missing for the last several days.  Also missing as of late has been Shelly's fun-loving personality, but don't you worry.  It is back today along with her full belly laughter.

Improvements I've noticed that she has made today are: the fully belly laughter, the ability to carry on a conversation, zip in her step and the ability to walk by herself to the bathroom, color in her face, sitting up in bed, the desire for food (she even licked the lid of her applesauce), combing her hair on her own, and setting goals for herself today.

Michelle has set some goals that she would like to accomplish today.  They consist of: taking a shower and washing her hair, go for a walk, eat food and keep it down.  They may sound like simple goals to those of you who have not seen her, but to those of us that have been with her, these are ambitious yet do-able goals.  One goal that she didn't mention, but is understood, GO STEM CELLS, GO!!!

After her shower today!

HAPPY BIRTHDAY!!! Michelle's New Dawn Begins

4:oo pm today it happened.  Michelle received the ultimate gift from her brother Gerald...the magical gold as we like to call it.  It was a pretty amazing event to view the tiny little bag of stem cells slowly drip through the IV line over the course of an hour and know that it was saving Michelle's life.  The room was packed with those that could be there for the celebration: Caroline (Michelle's mom), Steve, Rondi, Chelsie and Blair, myself, Karina, Kensington, Karadie, Cindy and the hero of the day; Gerald.

A minimum of 5 million stem cells must be transplanted to be effective, but no more than 10 million to be transplanted at one time.  Over 10 million can actually be counter-productive.  Lucky for both Gerald and Michelle, 17 million stem cells were collected from Gerald on Tuesday and 10 million were transplanted to Shelly today.  The remaining 7 million were frozen for the "just in case" clause.  I really expected the bag to look like blood, dark red.  The magical gold looked more like v8 juice.  It took just over an hour for Michelle to receive all 10 million stem cells.  The only side effect, a slight headache, which really could have been from the tears more than the transplant.

The BMT staff came in singing Happy Birthday with all of us joining in, presenting Shelly with a birthday card and a new fleece blanket wrapped like a birthday cake.  What a celebration it was!

Several doctors came in to check on her during the transplant.  A little more explanation helped us understand the entire process.  Michelle received 2 different types of chemo because different chemos kill the different cells of the body.  The last chemo, the cytoxan kills the bone marrow completely.  It was described like a hit and run car accident.  It did the damage, coming in hitting every cell then slowly killing them over the following 5 to 10 days.  As those cells slowly die off, the new stem cells that were transplanted today wiggle their way through Shelly's body finding their way into her bone marrow and then they do their job, rebuilding.  I don't have a medical degree, so I've explained this the best that I remember it or rather - understood it.  Forgive me if I made some errors in my explanation. 

Aside from the transplant today, it wasn't Shelly's worst day, but it wasn't her best day either.  Her energy has been completely zapped from her body.  The nausea is a little more under control.  She ate a little bit of breakfast keeping it down until 12:30.  Last I heard, she hasn't thrown up anymore today.  That makes it a good day.  As the stem cells graph her energy should slowly start to return. 

Thanks again for all the love, support, and prayers.