Alice's Biopsy Results

On Monday, while in clinic we received news regarding Alice's bone marrow biopsy, which was done last week.  We learned that her cellular density has increased from 5% to 15%.  This is great news.  What does this mean? It means that we wait again a little longer to decided what's next.  Tyler and I are learning even more about patience.  I suppose one can never learn enough patience in a lifetime.

We are happy to wait two more months and see if she improves again.  Avoiding a second transplant is our better option, if the stars align.  Because her cellular density has improved, this possibly indicates that her marrow is regenerating a little more and hopefully producing more, and giving us more reason to wait.  The true test will come with time, as we measure how often she requires infusions of red cells and platelets.  Normally the doctors wouldn't let one wait this long in her condition, however, she is doing very well clinically.

Alice did not receive any infusions this week in clinic.

Counts: ANC--2000, Platelets--15, Hemoglobin--8.8

Alice will have neupogen every other day this week, rather than every day.  This will give us a better idea as to how her counts are doing naturally.

She will likely require infusions next week.  It seems as though she is going longer between infusions....even being a day or two, this is improvement. :)

I asked the doctors if Tyler and I are seemingly indecisive with future decisions with Alice and he reassured me that it isn't just us....they (the team of doctors) are equally indecisive.  Therefore, at least we are all on the same page.  I feel like a broken record, but again Time is our Tool!

I was upstairs with Evie reading to her as she couldn't sleep.  I heard some sounds coming from the stairs, I looked over and saw Alice coming my way.  She said, "Mom, you wouldn't believe what happened to me!!"  (with her hands on her hips)
I wasn't sure what to think, for a moment I felt nervous that maybe she hurt herself, or something happened to her line.
I said, "What!"
She said, "Dad put me to bed!"
I felt a sigh of relief and a giggle, but then reminded Alice that it was 10:30 p.m. and Dad has every right to put her to bed.  She persuasively disagreed and somehow ended up joining our story time.
Tyler has since gone to bed, rightfully so--and now I'm stuck with two sleepless girls.  I'm considering taking some hypnosis classes that specialize in putting little girls to sleep....and staying asleep!

Lisy

Hawaii

Natalie's Wish

-HAWAII-

April 24-May 1

Can we stay here and never go home?  A regular question from Natalie. 

The water was just what Natalie needed.  She wanted to swim day and night. She would have tried to reside in Hawaii indefinitely had Alice and Evie been with us.

Tyler made a great video capturing some of our favorite things about our trip to Hawaii.  

Labs for Natalie

Natalie went to Riverton Hospital today for a chest x-ray and a sputum test.  We think her sinus infection is returning.  Her fevers continue and her symptoms are very similar to that of six weeks ago when we started her course of antibiotics.

We have started her again on further antibiotics until we hear differently.  We might learn more depending on the sputum test results.

Hopefully in the next few days we will see her symptoms improve.

As for Alice she is recovering from the biopsy.  She squats down to pick things up from the floor, because bending over hurts her little hips.  She is so cute.

We are looking forward to the upcoming beautiful weather, maybe it will help dry up some runny noses at our house.

Lisy

Update

This will be a quick update.  I have some pictures but can't find the cable to down load them...it's a common thing for me to loose.

Friday May 3rd,
Natalie came home from her short two day stay in the hospital.  She was so excited to come home as she hadn't yet slept in her own bed since Hawaii.  We headed from the hospital to Grandpa Duncan's viewing.  My grandpa passed away while we were in Hawaii.  He was one month away from 94 and lived an amazing life.  We are so happy we had the chance to visit with him before we left on our trip.  Saturday was the funeral.  We are so happy we could be a part of it.  We will miss him.

Monday May 6th,
Alice had clinic.  It was a long day, we expected this as last week was quick with no infusions...we tried to plan it that way, so while in Hawaii nothing at home would be too eventful.  However,  this time in clinic Alice not only needed blood and platelets but her pamidronate was due.  It alone is a three hour infusion.  Pamidronate is used to strengthen bones and prevent bone loss.  It is given once every three months.
Alice's ANC this week was 800, Platelets 10, Hemoglobin 7.9
Alice and I finally got home at 7:30 pm.  Each week it takes a little longer to match her blood.

Tuesday May 7th,
Alice had an orthopedic appointment today.  Her arm is healing very well.  I really think the calcium supplement she is taking is making a big difference.  Prior to her appointment she again managed to slip her cast off.  She must not like the saw. She is now wearing a black Velcro removable cast for two more weeks and then will be cast free.  Every time we go to the orthopedic office she and I use the side door to avoid the waiting room; near the door is a coat rack with a hook just her height.  Her favorite thing is to hang her jacket while we visit with the doctor.

Wednesday May 8th,
Alice had a bone marrow biopsy today.  She went to the Rapid Treatment Unit.  It is much easier than going through same day surgery.  The NP had to poke her three times to find what she needed.  I know Brenda, NP is great with the biopsies, so I worried a little that maybe there just wasn't enough marrow to work with.  Biopsy results will be in by Monday, our next clinic visit.  The doctors plan to sit with Tyler and I together to discuss the results and the next step in moving forward with Alice.

Tyler has been working on putting together a video of our Hawaii trip...it's been hard to find the time to finish it up.  It's coming along and we can't wait to share it.

Natalie saw the video today and almost cried because she wants to go back.  We had the best time ever!  We only took nearly 1,800 pictures/videos. ;)  We didn't want to forget a thing.

Lisy

911

The night we were boarding the plane to return home Natalie began to feel sick and was brewing a fever.  We gave her some Tylenol.  It seemed to break the fever.  We were in such a hurry to pack I had unintentionally packed her seizure medication in the check on bags.  Luckily I had already given her evening dose to her and only needed it with me for when we arrived in Salt Lake.  We flew home through the night.  All was well, each of the children slept most of the way.  I couldn't get comfortable no matter how hard I tried.  I watched a couple movies and relived the vacation in my mind.  Natalie was lying on me.  She remained fever free the whole time.

When we arrived home we all jumped in the shower/bath to clean up before seeing Alice and Evie.  Tyler's dad brought Alice home and my parents brought Evie home.  It was so good to see the girls.  Evie gave everyone a huge hug, except me.  I suppose she was mad or confused at me.  I was sure to fix that and kissed her little cheeks a thousand times.

By 9:00 in the morning nearly an hour and a half after being home we were so exhausted that we each began to crash at different times.  Our bags were strung out all over, it was chaos.  We completely forgot we hadn't given Natalie her seizure medicine.  As the day passed on I eventually got both the little girls to take a nap.  Natalie and the boys had been watching movies, and had fallen asleep.  I decided to take a nap myself.  I was sure to check Natalie before I laid done.  She was doing fine, no fever.

The next thing I knew Tyler was calling for me with great concern in his voice.  I jumped up and ran to Natalie.  She was mostly non responsive.  She wasn't holding her head up well and couldn't communicate much at all.  I could see in her eyes that something wasn't right.  She was drooling and acting funny.  I held her quickly and check for vital signs.  Tyler had already given her Tylenol and her seizure medicine at this point.  I can't express how thankful I am for Tyler being there for her just in time.  She then proceeded to seize completely.  It became aggressive and uncontrollable.  I held her still to prevent any additional injury and had my hand in her mouth with a clean cloth to prevent her from biting her tounge or mouth.

I was frightened and crying as I felt so helpless.  There was nothing more we could do....except call 911 and wait and hope that she would stop seizing.

Within three minutes or less the Lone Peak Fire Dept. arrived.  I have never been so happy to see anyone in all my life.  I was SO impressed with how fast they responded.  Every moment was critical for Natalie.  The four men that came to our rescue were absolutely phenomenal.  They were so good at what they had to do to help stabilize her.  The IV was placed and nasal versed was given.  After a few minutes she was calming down but totally non responsive.  Her breathing remained good, thankfully.

We are so thankful for the exceptional rescue these men gave Natalie.

We had neighbors show up and help, that was awesome, we love our neighbors.  They removed the boys from the scene as I wasn't able to, but will always remember the look on Matthew and Blair's faces.  I noticed that before the neighbor took the boys to her house, the fire marshal put the boys to work doing other things, and I now realize his intention.  So impressive.

Tyler rode in the ambulance with Natalie and I came shortly later.

We think this is what happened.  She must have some sort of illness stirring and causing the fever.  It is possible that it could be an ear infection, reoccurring sinusitis, or a virus.  A fever lowers her threshold of seizing.  She hadn't had her seizure medicine that morning.  And I think she was slightly dehydrated.  I felt like I was constantly asking her to drink more while in the sun and such.  She never wanted to drink much.  I began to almost force her to drink.  All of these factors together contributed to her seizing.

Tyler and I were extremely worried about her as she wasn't able to move the left side of her body for sometime afterward.  We worried that she may have had a stroke.  It was troubling.  Finally after some hours in the ER she began to show movement in her left side.  She is now fully functioning with her left side.

When all the chaos blew over and Natalie was stable, Tyler and I sat beside her bed talking over everything. We are thankful this didn't happen during our flight home.  We are thankful it didn't happen while away from home, earlier in the week. We are happy she was able to have a wonderful time...and especially we are thankful she is okay.

I didn't want to leave the hospital and return home until I felt she was mentally stable.  I asked her as I was leaving, what her favorite part was about the trip.  She said, "The fire throwing part" (The Polynesian Cultural Center's show HA-The Breath of Life---It truly was incredible).  I then felt better about leaving.  Tyler remained with her.  I knew I needed to be home with Evie.

Tyler told me that just before Natalie became non responsive she looked at him and said, "Dad, I don't want to die."  When he told me this I wanted to cry even more.  Of course she was frightened of what she sensed was coming.

Natalie you are so strong...WE LOVE YOU!!




Natalie asked each day that we were in Hawaii if she could stay for a whole year...but with the request that Alice and Evie join us.  The kids kept telling Tyler that he needs to get a job in Hawaii.  The trip was INCREDIBLE!!  We had a wonderful time!!  We are grateful for Make A Wish.


We are so excited for Natalie to come home...hopefully tomorrow!  She is anxious to go through her Hawaii souvenirs.  We hadn't much of a chance to unpack.

We also can't wait to post about our trip.  We have lots of pictures and movies to post.

Many thanks to the Disbrow's and Grandma and Grandpa Schellenberg for taking care of Evie.  Many thanks to Grandmother and Grandpa Fish for taking care of Alice, and for Amber; she did all Alice's IV medications and oral medications.  She did an incredible job.  Amber even spent the nights with Alice.  She woke at night with Alice helping fill her needs and requests, which is not an easy job.  Thanks!!!

Lisy

Completely exhausted and still recovering from the seizing.

Ditto

I was so happy to see her smile for me.  She looks tired but cute.

They missed each other.

Great Pals.  Happy to be together again.

They love the Hawaii dresses we brought them.  Alice has a new red cast.

IVIG for Natalie--More Infusions for Alice

Evie and Matthew...pals!

I'm staring to feel like it's Ground Hog day around here.  I wake up, look at the clock and think...'what do we have going on today?'  'Oh yes, a doctors appointment.'

Natalie had a visit with the immunologist Dr. Chen on Friday.  The labs we had drawn this past Wednesday were in preparation for this appointment.  Dr. Chen wanted to check specific antibody titers.  Natalie had two immunizations nearly four weeks ago...I think I forgot to mention that in a post, but this is a big deal for us.  She is starting all over with her immunizations.  We are taking it very slow.  Anyway, the titers measure how much antibody an organism has produced that recognizes a particular epitope.

Fruit Snacks...make it worth going to the doctor.

Natalie had some, but little response to the vaccines.  It was good to see some response, but we hoped it would have been more.  Basically, this means her immune system is still maturing and with time that response will improve.

So, to ensure that she would be good to travel, we went ahead and loaded her up with some IVIG to cover our basis while on vacation...this will really help protect her from getting sick while traveling.

Saturday night Tyler and Matthew went with Natalie to the RTU to have the infusion of IVIG.  She did well, it makes all the difference to have one of her brothers with her.  She was more brave!  They didn't get home until almost two in the morning.  It was a late infusion.  We are thankful for a great team of immunologists who have tested her immune system out enough to know what she needs at this time.

Nothing like having your brother by your side to make you feel better.

A couple hours later.

I can't even say how excited the kids are to travel.  We are all looking forward to a change of scenery.  I can't remember the last time we have been beyond Utah or Salt Lake Valley. The kids are counting down the days....to Hawaii.   It just doesn't seem real.

We are going to miss the little girls.


Alice had clinic today, mostly the same scenario as last week, although her white count jumped up again (neupogen).  She received platelets and blood today.  It took until 3:00 in the afternoon to start the infusions.  A full day in clinic.

Levels:  Hemoglobin 7.8, Platelets 22, ANC over 2000 :) wish it weren't artificial, but we'll take it.

Checking In

Getting Comfortable

We suspect that when we return from Natalie's wish trip that things will start happening very quickly with Alice in reference to a second transplant.

We already know the flight home will be long...that sounds terrible doesn't it...we don't sound a little burned out do we? ;)

As far as feeling burned out--we feel that way often, but can't entertain the thought too long, rather we have to keep moving forward and telling ourselves that we can do it!!!  Just like what Alice would say when she was so sick in the hospital..."I can do it!"  It makes it easier when you tell yourself those simple words.

Thanks for your prayers.

Lisy

Itchy, Itchy, Itchy

She loves dresses

Visiting Grandma and Grandpa Duncan...Lisy's grandparents

Pretending to drive Uncle Deans sports car

Matthew found this on his way home from school and gave it to me.  I love how thoughtful children are.

This video is Natalie showing how brave she is with her blood draw on Wednesday the 17th!




This is an old video when Alice was in the hospital with GVHD and wasn't able to eat.  I found her pretending her pencil was a cookie...I had her pretend again so I could record it.

Busy Week

It was another long day at clinic (Monday). We were anticipating Alice's numbers this week since it would have been two weeks she had been off of her marrow medicine. Last week her ANC count had fallen to 600. If today it was the same it would have been great news for her. However when the doctor came in and reported her numbers it was worse than we had expected. Her ANC spiraled down from 600 to 100. I sat back in the chair and finally exhaled a breath that felt like I had been holding the entire week. When I breathed back in, it felt as though I was inhaling reality as well as the air, and I became old.

Dr. Boyer, expressed his frustration too as he explained that the next decisions to be made would be difficult. It is concluded that Alice will be required to have another transplant. The difficulty will be deciding on how to give it to her. Will we request more stem cells from her previous donor? Or would it be better to start again with a new donor? There are upsides and downsides to both.

When I think of her lying sick in bed with mouth sores, and getting up only to wretch in her pink bucket, my shoulders sink and my frame aches.

Alice, at least for the clinic visit was happy and played as she usually does. She required platelets and slept through most of it. Upon coming home Lisy and I spoke of what is to come and how we will help Alice over her next bump in the road. 

Today Alice received a new cast and the x-ray shows that her bone is healing very well.  We have been loading Alice up with a calcium supplement.  The prescribed calcium supplement from the doctor included magnesium and zinc.  It made her stomach terribly upset and she vomited with each dose.  The very day we decided to stop the prescribed supplement, my cousin Stefanie showed up with the perfect fix...a more gentle supplement, yet very effective.  How thankful we are for her timing.

Somehow she wiggled her way out of the cast.  It was intended to be loose because she was still swollen at the time it was placed.

We heard her talking and playing by herself, when we checked on her she was playing with her cast.

We gently slipped it back on.

The technician at the orthopedic office went to get the saw, to cut Alice's cast off, when she returned, Alice said , "I don't need that saw, I got it off".

A new green cast.  That is the color she wanted.  

Evie mimicking everything she sees...I helped her put Alice's old cast on because the thumb hole was tricky.

Natalie was very brave today as she needed to get more labs done, which meant she would need to receive a couple needles. She was also asked to be on camera in the process. The footage would then be used in effort to help other children feel more comfortable when they get a poke from a needle.  Knowing Natalie, I was very skeptical on how she would do. I thought the only thing she would show these kids would either be, first: where the best hiding places in the room are, and second: to explain in high decibels how to tell everyone they are "dumb," and follow that up by instruction on how to run for the hills when the needles come out. Alas, I was wrong. She did well, and I'm proud of her. Lisy got it on camera or I wouldn't have believed it.

We will post the video tomorrow.

We are excited for Natalie as we are helping her prepare for her wish trip to Hawaii. For now we will be getting her ready and making sure she feels that we are focusing on her as well as mentally preparing for Alice's next transplant. It is interesting enough that this past week I came to realize how far Natalie has come to having a normal immune system. I watched her splash and swim in the pool today. Her smile and content of being in the water with the other children gave me a sense of relief. Natalie doesn't smile enough, and I guess I can't blame her. From her point of view, I imagine she probably thinks she hasn't had much reason to smile. But lately her smiles are coming more often, and they seem to be lasting longer. I would suppose her smiles to be a bi-product of her feeling normal. And I'm sure the anticipation of flying on an airplane headed to Hawaii has its positive effects too. We are thankful to the Make a Wish Foundation!

The three older kids have been learning some pool safety skills and basic swimming from a great friend of ours, Nicole.  This helps Lisy and I feel better about things, while in Hawaii surrounded by water.

Which brings me to another point that seems to make me sound like a broken record, but each time I contribute to the blog I feel an overwhelming sense of gratitude to all of you, and therefore need to express my thankfulness for what you do for us. We read every comment you send to us. We love them.  We would not be where we are now without all of you. Thank you. Thank you for helping us help our children. 

Tyler 

Happy Birthday Blair!

Blair turned 6 today.  He was very excited for his birthday but managed to keep cool and was patient for the evening to come when Grandparents came to celebrate and sing happy birthday. 

Blair we love you and are so proud of you!!!  Happy Birthday!!!

Blair requested Clam Chowder for his Birthday Dinner.  Our sweet friend Emily brought some by the day before, we had Chowder two days in a row.

Natalie went to the dollar store several weeks ago to get Blair a birthday present.  She found these great eye glasses.  She had it wrapped and hidden for three weeks prior to his birthday.

Exciting

Yummy

Alice and Grandma

Blair was the VIP in his kindergarten class.  We shared with the class all of his favorite things.  He was a little shy.

Updates

Because I am behind this week, I will make this post in segments so I can keep it all organized.

Monday April 8th 

Alice had clinic.  Counts:  ANC 600, Hemoglobin 7.9, Platelets 52.  All counts are low, however, we knew they would drop as they are no longer being artificially supported, yet we hoped for better results.  The doctors are giving her another week on her own before they start boosting her again with the Neupogen.

It was a long day for us.  She required more blood, however, continues to be more difficult to match.  We are thankful for that person who planned ahead and donated at a blood drive.  She did not receive platelets.

Interesting note:  The couple days following Alice's broken bone were miserable.  She was in terrible pain.  Even pain medicine wasn't helping.  She cried all day and night.  Her body was looking very poorly, as her low platelet count began to manifest itself all over her body.  Her little arm was struggling to heal.  Finally, when she received platelets this past Saturday, things changed instantly.  Within hours of receiving the platelets she no longer complained of pain.  Certainly most of the platelets rushed to the wound and began working their magic.  Her entire well being is dependent on others.  It's amazing how life can be shared.

Plans continue to move forward for a second transplant.  Tyler and I are struggling with this decision.  At times we feel good about it and other times we are confused.  Regardless we are heartbroken.  It almost makes it harder knowing what is ahead in reference to a second transplant, where as before we had no clue what transplant was first hand.  It is good to know what we know, yet it's not....hard to explain.  Right now, Tyler and I are just focusing on keeping our minds and hearts filled with faith not fear...it's a constant battle.

Thankfully, we know too much to be afraid and hopeless in the end.  We feel best when we are reminded that Heavenly Father is the captain of this ship and knows our course even in the darkest and stormiest nights.  This is reason enough to stop occasionally for that sigh of relief and comfort.

Playing in the wagon.

A much needed nap...seven hours in a clinic room is exhausting.  She was extra emotional today with every little thing.

Nice and Cozy

As For Natalie

Natalie also had a doctor visit today (April 8th)....thankfully no labs.  Natalie was seen by the ENT, Dr. Smith.  We are very excited to say that Natalie's ear drum has healed nicely.  Dr. Smith gave Natalie the green light to swim and ENJOY IT!!!  This is awesome!!  So, it is true Natalie has already been swimming, and she said to me, "Mom, have you ever seen what it looks like under water...it's a different kind of blue."  I almost wanted to cry.  I then told her, "Just wait until you see the tropical fish in Hawaii!"  She is going to LOVE it!

Coming soon, A post dedicated to Natalie's new water adventure!!

AND...more amazing news, the hearing test (done April 8th) shows dramatic improvement.  She no longer needs hearing aids!  Still high frequency loss, but hearing aids don't fix that anyway.  We have noticed that gradually as her ear healed that she was hearing better, needless to say, the contention level in our home has improved too.  Less shouting.

Still we plug away at the gluten free diet...it's getting easier.  I need to do some research on places in Hawaii that offer gluten free menus...this might be tricky being away from home with this diet.  Any suggestions?

Just wearing a swim cap around the house, are we excited?

Evie does everything she sees.

Natalie's sinus infection is healing.  She hasn't coughed in over a week.  Her fevers have ceased and she is feeling great.  Two days ago she had a mini seizure, however, we missed a dose of her Keppra.  We won't make that mistake again.

 Tuesday April 9th

Alice went back to the same orthopedic doctor who helped us with her leg.  They are so great and wonderful to make special accommodations for us, as we have to avoid waiting rooms etc.  Alice was given a darling pink hard cast today.  It's water proof! :)  They will change it weekly because of her risk of bacteria.  She will get to enjoy all the colors of the casts.  She sometimes puts little things in her cast to itch it.  I think it's cute, but she complains of the itch.

Icing her arm before the hard cast.

Pretty in Pink

Evie wanted to wear Alice's old temporary cast.

We are getting too excited for Hawaii, it can't come fast enough.  I'm still sad about leaving my babies, but I know they will be safer in Utah with family than they would be in Hawaii.  We have some packing to do and lists to make...it's going to be so fun!!

Lisy

Platelets

Alice received a giant bag of platelets today.  She couldn't wait until clinic on Monday.  In fact she will most likely receive more on Monday.  Her mouth was starting to bleed out...this is a good indicator that she needed them asap.  She said to me over and over, "Mom, I need to go to the hospital."

When she came home from the hospital she said, "I feel better."  She really perked up and wanted to stand again and even play.  Her arm is beginning to throb less and the swelling has improved.  She feels better each day.

Tyler and I immediately felt a huge sense of relief when she received platelets.  We were worried about her.

Alice wanted to read me a story so I recorded her doing just that....this is just audio.  She is obviously feeling better. :)

Lisy