Alice is Home--Blood Transfusion

Alice came home yesterday from a 5 day hospital stay.  She did very well and enjoyed most of it.  She needed a blood transfusion before she came home.  It was a little odd that she needed blood.  Her hemoglobin was 7.  The doctors think it is possible that her low blood level was caused by a virus.  Nothing has come back positive yet, except Rhinovirus, which in the past has not reduced her red blood cells.

She received Neupogen twice and IVIG once while in the hospital.  Next week in clinic we will see if her blood levels have maintained.  We hope they do.

Alice is finally off antibiotics (IV and Oral), this might help her diarrhea improve.  We have been doing acidophilus intermittently, however, will start it more regularly. We are going to cut out apple juice, hopefully it will help too.  The apple juice was 5 parts water and 1 part juice.  Still it may have been contributing to the diarrhea.

It's wonderful having Alice home!

Lisy

We love the comments and advice...even though we don't reply (time purposes) we are always up for trying things to improve our situation.  Thank you for the ideas...we hope the little changes make a big difference.

Hospital Sleep Over With Aunt Amberly

Last night Amberly came to stay with Alice.  She and Alice had a great time.  Aunt Amber always comes prepared.  They did princess puzzles and more.  When I told Alice that Amber was coming she said to me, "You can go now Mom."  I was happy she was so excited and I know she is in good hands.

Alice insists on ordering her own food, wearing her Rapunzel pajamas from Uncle Paul.

Aunt Amber with Alice, and new P.J.s for the sleepover.

Once Amber arrived I headed home, It was nice to be home and snuggle with Evie; and to be with the rest of the family.  At home we stayed up late watching all our old home videos.  The kids loved it.  We have not seen them in a very long time.  It is interesting how we can long for certain memories of the past.  Our children are still young, yet Tyler and I kept saying that we would love to go back in time and enjoy the moment once again.  It also made me miss little Alice.

We anticipated on bringing Alice home this morning, however, the doctors called and would like to keep her for a couple more days.  There is concern regarding her GI system, it is wise to monitor her a little longer at the hospital.

Alice feels discomfort, I'm certain of it, however, she acts as if all is well.  I know it is because she doesn't know any different.  Normal for Alice is unlike normal for most people, her stamina and attitude amazes me.

The kids at home are busy playing, watching home videos and drawing mustaches on each other.  Never a dull moment.  So much for my eyeliner pencil.

Lisy

Alice Has A Fever--ICS

Last night Alice complained her ear was hurting, she was slightly warm, nothing too troubling.  By 3:30 am she had a temperature of 101.4.  Tyler brought her to the hospital.  The standard initial tests were done, blood drawn and cultures sent off.  They started her on an antibiotic called Cefepime, this will clear up any possible ear infections quickly.  Hopefully Alice will come home Sunday Morning.  She has not had additional fevers, and by Sunday Morning the blood cultures will have had time to grow something if there is something there.

Alice is having a great time here, It has been fun to see everyone; we love the staff at the hospital.

Tyler and I were discussing in clinic on Monday that it will be hard to leave the bone marrow service when the girls are done...Natalie is almost there. Soon Natalie will be seen only once a year, as long as she remains healthy. The bulk of her medical care will then be transferred to immunology, and her other specialties. It is a bitter sweet thing. We have truly appreciated the program and people, and soon we will take a big step forward. It is a wonderful and exciting thing to take this step forward, yet we will miss the great people we have come to love.

Easy hospital stays such as this seem so quick and simple, however, I feel there are more challenges at home with Evie who is still trying to recover from this past illness that went through the house.  She wants me to hold her non-stop.  She has been fairly pleasant despite her discomfort. 

I came to the hospital this evening and traded Tyler places...I already miss little Evie.  Tyler is so good with her, they have become great pals as of late...I know she will be just fine.



Lisy 

Last Round -- Happy Transplant Birthday Alice

Yesterday (Wednesday) was Alice's final round of Rituxan.  She did well, and now we just wait and watch.  It will take several months before we can measure the successes of this treatment.  It can take up to two years to learn if her body will recover from the treatment as well.   We hope eventually she will recover her B cells.  In the meantime she will be supplemented with IVIG, donated antibodies, which are made from B cells.

Alice no longer needs her daily antibiotic (Cephalexin), her IV anti-fungal (Caspo), and the IV anti-viral (Gangcyclovir).  She remains now with only one IV medication.  Life will be a bit simpler now, in this regard :)

Clinic was long for us yesterday.  Natalie had buckets of labs, they drew more than the allowed amount (with a doctor's approval)...all in one poke, we were very happy it went so smooth.  Natalie was brave enough.  She had a three hour long Psychology evaluation, she was a good sport, her Psychologist was awesome.  At one point we called a break to feed her.  She skipped breakfast, she was too upset about going to the clinic, she gave A LOT of blood, and she seemed weak.  Once she ate something and had a drink, she seemed more alert and ready to finish the testing; after which she headed over to audiology for a hearing test.  Partly into the testing she was too sleepy and tired to continue.  No big deal--we rescheduled.

Unfortunately we discovered in the pre-phase of the audiology testing that Natalie's right ear drum has not yet healed from the tube.  They will give the ear another three months to heal...if it doesn't she will require a surgery of patch work to close the hole in her ear drum.  We will hope for the best.  It is hard for us to see all that she has been through and wonder how much more she must experience.

Tyler and I came home exhausted.  Alice was upset when we arrived home, she wanted to stay longer and Natalie was so happy to be home.  Funny girls!

Today is Alice's One Year Transplant Birthday!!  Jan. 17th

Happy day for Alice...she and I took a long afternoon nap together.  I believe that was the best thing that happened today.  Later we took all the children to visit Uncle Justin and Aunt Jeanette in Mapleton to explore the snow cave system they created in their back yard.  It was awesome!  Everybody except Evie liked it, surprisingly; Evie is such a snow bunny, maybe the tight space was scary for her.

We hope to make contact with Alice's donor.  If her donor consents to exchange information...we look forward to personally thanking her for giving life to Alice.  We will always remember the selfless act of giving by Alice's donor each and every day---Much gratitude to be expressed.

Lisy

Slow and Steady Wins the Race

I've been thinking a lot lately about the tale of the tortoise.  I feel like a turtle, slow and steady.  I keep saying to myself, "Slow and Steady Wins the Race".  The days have been long this past week.  All the children are dealing with something, including Tyler and I.  Tyler has a terrible head cold; I have a cold left over from the flu; Natalie, believe it or not is the healthiest of all, yet continues to deal with the hives; Matthew recovered from the flu then developed a secondary infection in his ear; Blair has croup; Alice vomits regularly with muscle pain and tummy aches, and diarrhea (which could be a result of many things in her current situation); and Little Evie seems to have merged the flu right into a double ear infection and junky lungs.  It's no fun at all.

Last night was almost comic...I was running between all five children tending to each child’s needs.  Natalie was settled once the Benadryl began to work its magic.  Alice kept the pink bucket near her with a Chux pad beneath her...and a watery apple juice bottle in her arm.  I had the thermometer, stethoscope, otoscope, Advil and hot rice bag with me at all times--I was ready.   I was so thankful that I had taken a nap yesterday; Tyler was so good to keep the kids from waking me...surely it made the night's challenges bearable.

We started antibiotics today for Matthew and Evelyn; Blair is taking a steroid for his croup.  Things are going to improve around here. :)  

It has been a very long time since Tyler and I have been ill.  This past week we have been reminded of how blessed we have been to have gone so long without sickness.  We can hardly complain, we have been watched over. 

Again, we are at crossroads with Natalie and now Alice in regards to gluten.  They had been doing very well as we reintroduced gluten, all was well, but now some few months later we are seeing hives on Natalie and tummy aches with Alice.  

We are going to hit it again with both girls....no more gluten!  I wish to know 100% what is actually happening with them.  It may take much time and effort to solve the problem.  It's a hard thing to change a diet so drastically.  Surely it won't happen over night.  I have many great resources to pull from...thanks to so many who have provided advice and websites, etc.  

This past week, we have played the Wii A LOT (the only good thing about being sick).  I walked in and saw Blair playing, I said to him..."Blair can you be Mom's helper for a minute?"  He said, "Okay Mom...I'm a good boy even when I'm lazy."

Lisy

After a couple days...washing syringes is a regular thing around here.

Round 3 and The Flu

I intended to post earlier this week, however, I have been under the weather and have felt very little motivation to do much of anything.  Monday night I substitute taught a Pilates class...had a great workout, the next day my muscles were sore, more than normal.  I thought it was from the class, although it was the beginnings of the flu.  I spent all day Tuesday cleaning the house and making sure I sterilized thoroughly.

Matthew has been sick since Friday...a full week now.  We had him tested and he was positive for Influenza A.  He has missed practically a full week of school.  Poor little guy.  Evie got it next, then myself.  Blair seems to be slowing down as of today.

My sweet friend has brought dinner by two nights in a row.  I was especially thankful as I wasn't feeling entirely well to cook a meal.

Natalie, Alice and Tyler are well presently.  We hope that the flu shot that Natalie and Alice received will protect them from this terrible virus.  It's strangely true that the house isn't well and Natalie and Alice are not the sick ones.  We hope it remains this way.  Natalie practically eats  an entire bag of cutie oranges herself each day...maybe all the extra vitamin C will keep her going.

Wednesday Alice received her third round of Rituxan.  It went well.  Getting to the apt. was the challenge.  We had a long night with Evie, by morning we were exhausted.  The keys were lost...I finally found them in the girls' dollhouse.  Needless to say we were not on time to the appointment.  Next week will be better.

Today (Thursday) Alice had an early appointment with the orthopedic.  I called and cancelled it because it wasn't absolutely necessary.  Later today Natalie had an appointment with the pulmonologist.  She didn't want to go AT ALL.  She has long passed her threshold of doctor's appointments.  She fights it entirely.  This month is busy.  We hope she can manage enough to tie all the loose ends so she can return to school and feel like a normal girl...that is all she wants.  Speaking of which Natalie has complained less this week about not being in school because Matthew has been home to provide company on her level.  There is always a positive among a negative.

Natalie continues to ask about her Wish.  It sounds like it may be just around the bend.  She is desperately in need of something wonderful, new/different, exciting, fun and adventurous.  The person who created the Make-A-Wish foundation is someone special...as well as those organizations/individuals who provide funding.  The children find much hope and healing through this program, I'm certain of it.  We are tremendously thankful to be a part of it.

Lisy

Alice in clinic...enjoying the newest toy at the clinic--a Minnie Mouse bow shop.  She is much better  at leaving the toys behind, because she knows they will be there when she returns.

Pulmonary Function Testing.  It's exhausting, but Natalie did great.  An hour of  aggressively working the lungs would be tiring.  

Finished.

She just wanted me to take a picture of her.

They boys though the nose plugs Natalie had to use today were pretty cool.

  

Alice Round 2 Rituxan

It was my turn to take Alice up for her Rituxan treatment this past Wednesday. When I woke her up, the first words out of her mouth were, " I get to go to the hospital today...yeaaaaaa." She is always compliant to get her clothes on and prepare for the trip when she knows the destination will be a room where her request to play with toys will be granted. After arrival and settling into her room she was pre-medicated with some Benadryl and I had supposed she would start to dose off, but it never happened. She had anticipated the Benadryl's affects and mentally fought through the drowsiness. I laughed to myself as I watch the vigorous play slow down to a vacant stare, and then five minutes later her eyes blink and she becomes herself again. She beat the system today. The Rituxan treatment went well. Her numbers have not changed much, but we do not expect them to shift until her treatments are finished. When it was time to go, she cried.

The doctor called a couple days after Alice's visit on Wednesday and informed us that she had a negative CMV (cold virus) test.  Great news, we can reduce her infusion of Gangcyclovir to once a day.

Natalie's asthma has been kicking up lately due to the air quality outside. She will cough all night, and in the morning her stomach muscles as well as her throat are spent from the "all night" workout. After studying the weather forecast it didn't look like the inversion would be swept away for another few days so I had the idea to get her up and out of the bad air. I decided to take her, Matthew and their Uncle Josh sledding in the mountains. It was great for Natalie as we rose out of the bad air, her coughing slowed down. For one mile we sledded back to the car on a single tracked path underneath the snow covered pines and wound around logs and rocks that would bounce us faster down the mountain. Our feet were the brakes and when used the momentum would cause the snow to spray in our face. It was so cold it gave us a brain freeze, but the excitement of sliding down the mountain quickly makes you forget. The smile on Natalie's face, I think read as though she had forgotten for a moment what she has gone through this past year.

Tyler



A short clip of Sledding down the mountain. Uncle Josh on Camera duty.

The Reality of It All

Interestingly I have started this post several times...it began months ago and continues to linger on my mind.  I want it on my blog, because someday perhaps my children will read this.  I want them to know the reality and the truth about how it (this medical journey) all happened.  I also want to share it publicly because Tyler and I feel like it is important for everyone reading to know and understand The Reality!

Tyler and I are your average basic people, there is nothing spectacular about us.  We make mistakes every day.  Some days are considered good and successful, other days are discouraging and difficult.  What we have been through over the past several years has been anything but average.  We tread a difficult road.  There are many people who have rough roads to travel.  Not one person travels with smooth paved roads of gold....ours just happens to be like those in Radiator Springs. ;)  that was for my boys...they love Cars.

The good news is that we don't feel like our road is less desirable than another.  We are happy to be where we are.  What we do is specific to us and we feel blessed and honored.


I want to share some of the reasons why we feel so blessed and honored as I answer the question we tend to be asked most often...that of---"How do you guys do it?"

First of all, we feel an enormous amount of trust in God.  We know that he does not make mistakes.  We feel so blessed to have the children we have.  It is not chance that Natalie and Alice came to this earth with a  malady.  Tyler is 1 in 40,000 and I am 1 in 40,000.  The odds of us finding each other are phenomenal.  It happened and we have never regretted it since.  The blessings that have come to our family through our health struggles have provided us with a better understanding of who we are and even a better understanding of the purposes of this life we call mortality.  The blessings in store for Natalie and Alice are infinite...to experience such struggle that others may gain strength is among the most selfless deeds.  They themselves will perhaps be strengthened beyond their age.

Second of all, we feel that our journey has not been traveled alone.  It's mighty difficult to feel alone and discouraged when you have many people cheering for you and telling you that they are praying for you and your family.  It's tangible!!

Again, the question of---"How do you guys do it?"  Simply answered I would reply in two parts; just as I said--1. Trust in God:  2. Receiving help from others.

The two answers I have provided need explanations.

I want to be specific and write of the sweetness we have experienced from others.  I have hesitated to do this earlier because I was worried I might forget something.  I couldn't possibly list all the ways people have served us, please know that we have been blessed by every single act of kindness, regardless if it's mentioned or not.

Tyler and I understand how much work, time, energy and resources have been given in our behalf...we can't express in words the miracles that have taken place because of it.

We live in a beautiful home that is ideal for our situation...it is not ours.  We drive reliable and comfortable cars...they are not ours.  We, the entire family wear new lovey clothes/shoes that we did not buy, but were purchased/donated in the perfect sizes to fit each nicely.  On occasion Tyler takes me out to dinner, he thanks those who provided the means to do so by way of gift cards, etc.  We are thankful to those who have watched our children when we could not be with them.  The children have lovely quilts, games, toys, books and learning tools to keep them busy and engaged.  They have dress ups, they have luggage for the day we get to travel somewhere, they have warm snow clothes, arts and crafts to be creative and innovative.  We have had help with cleaning when it was most critical. We have a personalized laundry service...the real kind of service, the kind that is rendered without a tangible reward. We even had a lovely garden that we did not plant, yet get to enjoy the harvest.  The children have bedrooms decorated especially for them...again something we could not have had time, energy, nor resources to do so, but meant so much to the children.

The meals that have been shared by neighbors, family and friends have been incredible.  Imagine what it's like to have someone fill your entire freezer with the best meals ever, it's amazing, to have a friend bring dinner each week.  The time sacrificed by many in organizing fund raisers to allow Tyler to be home and able to take care of his family in such a time of need is beyond explanation.  Packages that arrive at the door-filled with excitement, the letters and notes, words of encouragement, texts, emails, comments on our blog and much more...So there it is----THIS IS HOW WE DO IT!

It's an incredible thing to look around and every little detail is a constant reminder of that someone who loves us and cares about us.  Everything about us is from the sheer goodness of another's heart.

It just happened, we did not ask for such blessings...they came.  People are good.  People are selfless.  There is no doubt between Tyler and I that we could not have made this journey thus far without the selflessness of others.

Our family unity can be credited to those who stepped up and gave of themselves.  It made it that much easier to do something extraordinarily hard.  It would be too easy to say, 'this is too hard--I can't do this' without support and encouragement from others.

The old saying 'When the going gets tough...the tough get going' needs an addendum.  I will make my own.  'When the going gets tough...and people come together...anyone can get going'.  You are what you think...if someone tells you that you are great--you will be.  If you tell yourself you can do this--you can.  The only thing that keeps us from success is our self.  A positive mental attitude is the first recipe to success...mostly a positive mental attitude is obtained through the kind deeds rendered by others.  We have been able to stay positive with the help of others.

When we first embarked on this double transplant journey...we knew that we were over our heads.  We knew it was going to be bigger than us.  Of course we wanted to do it without help, being independent is a natural healthy desire.  Something better happened though; we felt the importance to accept help.  It's not easy to accept help.  Allowing others to serve and give of themselves has blessed our family more than anything we could have provided ourselves.  We have a deep appreciation and understanding of service.

Our prayer is that the kindness showed to us will be returned in some manner times ten.

So press forward we will...with smiles :)

Lisy

Alice's 1st Round of Rituxan

Alice spent the day in the clinic receiving her first round of four Rituximab treatments.  All in all everything went well enough.  After the first 15-20 minutes into the infusion she became sick, vomited and became red in the face.  She said, "Mom, I feel yucky...I'm sick."

The nurse stopped the infusion to let her body rest, we gave her some anti nausea medication and once she settled we began the infusion.  Things improved...she even slept through most of it, thankfully.

We learned that Alice's CMV (cold virus) came back positive...which means another IV infusion for her.  She will need Gangcyclovir every 12 hours for several weeks.  Hopefully in the next few weeks she will only require it every 24 hours.  Considering that she is entering another phase of immune breakdown (Rituximab),  the doctors don't want to take any chances on this cold virus...better to prevent it worsening.  I called the pharmacy and asked that I have a second pump, in order to be more efficient with her infusions...trying to promote more sleep at our house. :)

While in clinic I was able to coordinate many appointments for Natalie and Alice this up coming month.  January will be busy.  Natalie has visits with Pulmonology, Neurology, ENT, Cognitive Rehab, and Bone Marrow (1 yr. post transplant work-up).  For Alice she will finish her chemo before January is over and only has one final appointment with the orthopedic (for her leg)....and of course her continued weekly Bone Marrow appointments.

Hopefully after January, our schedule may ease up a little.  Possibly soon Natalie can start school.

It seems silly, but sometimes I get nervous to think maybe soon we will be merged back into normal life.  I worry that I won't be able to keep up with all the outside demands, etc.  Of course it will be awesome to participate in a variety of things, however, I worry that if it's too soon we will be disappointed or discouraged.  I suppose allowing fear to determine our decisions is a poor choice of route.  We only wish to do that which is best for each of our children physically and emotionally.

Somehow things come together and everything works out...it always does.

Lisy

The Ice sculptures are finished.

Not Feeling Well

Keeping the Pink Bucket Close

It's Over, All Better!

Going home, Alice brought her new backpack...full of treasures to the hospital.  She loves it.

Merry Christmas!!

Merry Christmas to All!!

We had a wonderful Christmas.  Everything about it was lovely.

Yes, we were all together.  The night before Christmas Eve we got nervous that Alice was getting sick, she vomited a lot and her tummy hurt and she seemed warm (temp.)  We watched her closely and she improved,  we were thankful.

Natalie wanted to be sneaky and set up a video camera so she could catch Santa.  The video worked, however, Santa had put his big red bag right in front of the camera...not knowing ;)  All she saw on the video was red and she could hear bells jingling and Santa saying Ho Ho Ho as he left; even then, she was thrilled to have something magical on the record.

When morning came (at 4:00 a.m.) the kids could not have been happier.  Tyler and I felt like we were in a story book.  Everything was perfect and wonderful.

We have so much in which to be thankful!

Many of our blessings now and over the past year, etc. have come by way of others....in many forms.  It is an amazing thing to witness the inside of another's heart.  It is also amazing how much happiness and gratitude one heart can hold without bursting.

Thank You,

Lisy