Much to Share

I have had such a hard time writing this post...not because I have difficult news to share, but because I haven't been able to gather words to express my recent emotions.  Hopefully I will give my heart some justice in this text.

First of all, clinic on Monday July 28th brought more good/steady news.  Alice's counts are still holding.

ANC 1500
Hemoglobin 10.4
Platelets 211

and...

Tyler and I proudly announce that Alice will only need to visit the Bone Marrow Clinic once a month.  This is amazing; even her Broviac line will be removed in the next several weeks.  More medications have been removed.  She no longer is taking any steroids of any sort.  At this point Alice is only taking 4 medications. An antibiotic (Septra) which is taken two days a week.  An antiviral taken twice daily and the remaining two are vitamin supplements, Calcium and Vitamin D taken once daily.  Truly I can't even describe how exciting this is.  It feels so strange to have such a simple medication routine.

Alice's hair is officially long enough to tangle...she pointed that out to me the other day, surely a reference point; she reminds us when she needs her dressing changed and she cooperates easily with the process, maybe another reference point; could it mean we are done with the services her line has provided over the years; her cute fuzzy body hair is thinning, I'm a little sad about that; she no longer wears masks everywhere we go, except places like hospitals where their is sickness around.

All of these things, including the medications and hospital visits have been such a huge part of our daily living. It seems strange that they are becoming memories we talk about rather realities we live constantly.

Which leads me to where I hope to share the peculiar emotions of my heart.  Tyler and I were contemplating recently where our lives have been and where they are now.  I tried to pin point "The Moment" when it got simpler or easier, but couldn't.  Obviously it has been ever so gradual, but yet feels so sudden that things seem to be stable and dare I say "normal".  I struggle to recall the transition of time between survival mode and now.  It just happened...all the while, what we thought were mundane daily efforts have become measurable accomplishments.  I know I have said this before, but "TIME" is magnificent.

The more I contemplate this subject the more thankful I become.  I have found myself on some occasions not being able to control my emotions.  I burst into tears and become so overcome with gratitude that it's nearly mistaken as something more traumatic than it is.  Let me try to explain what I mean. Sometimes we need to be tough and strong and hold back weakness...this is required in certain scenarios. We naturally as human beings protect our hearts from being hurt in anyway...but for the first time in a long while I don't feel the need to be so protective.  It's so refreshing to have a vulnerable heart....relieving maybe. It's like we have been holding our breath for so long and now we have taken in the rescue of oxygen.

I was telling a friend about the strange feelings that are associated with this transition.  It is hard to describe, but because we have been doing things a certain way for so long there is naturally a bit of discomfort that comes with change.  The hospital has been a very big part of our life.  We have been filling the absence of hospital life with other things.  I have to admit it is so exciting to do and feel more normal, and yet I'm a little nervous to join the fast track; that old life seems overwhelming to me at times...ironic that normalcy can be overwhelming when comparing it to three bone marrow transplants and so much more.  It's what you get used to...I suppose.  Anyway, we are grateful for the blessings we have and the stability of health we posses at this time.

Tyler and I are clearly aware and accept that fact....that Alice and Natalie will never be "out of the woods" entirely, and will also have residual dealings, but now compared to where we have been is phenomenal to report and measure.

We anxiously anticipate the arrival of our new baby boy.  We are also aware that our lives can drastically change if this little one is affected with SCID.  We would be again taking a familiar road of hardship and struggle.  It's difficult to wrap our heads around the thought of retracing our steps of transplant and to watch our precious baby experience the suffering associated with it all.  In a couple weeks we will meet this little man and then two weeks post birth we will learn of his health status.  Twice we have tried to retrieve amniotic fluid to test for SCID prior to birth, but both times the position of the baby and placenta was such that the risks associated with entering the womb were too great.

We know he is supposed to be here and with our family, no matter what---this knowledge does provide tremendous strength for whatever lies ahead.  I pray every day for his health and have keep my thoughts positive regardless.  Nevertheless, I admit that I worry about my own self if I were to learn that he has SCID.  I don't feel prepared if it were the case, but I know he belongs to us and that would get us through.

We will update the blog as soon as he makes his arrival.

As for Natalie, she is doing awesome in many ways.  Socially and emotionally we have seen huge changes with her.  She is bridging the gap between residual effects of her ill life and the new confident life she enjoys now.  From a health standpoint, she is strong considerably.  There are some things she deals with that I wish weren't so, but we are dealing with them.  She has chronic hives, and takes an allergy medication for it daily.  We have consulted with the doctors and are watching it.  She still finds the Celiac life a challenge but oh how it has gotten easier with time.  Natalie will have her yearly visit with Bone Marrow this coming September, also we will be doing another updated hearing test for the upcoming school year.  Last week she had a follow up with the neurologist and all is well, no changes in her anti-seizure medications.  Natalie has been waking before everybody each morning and reading her chapter books, she is developing a love for reading.

The following message is from Alice:

kfggggghjgjiiuhkbjuigtujugughiuyhtyujjjjuguguuutyuyyiyhtcgrgytytgyuu984ogytgooooy7yt87ry8y7o bhiy6564tffdvgvffhuurwfrtgfghfgfgfyyyyudhgfgffhdhfhhdhggygfeuyguy bffffffffmggjfdml
gkjfkkykfjghjfahwjkfjdvfhhhhhhhhhhhhhhkgkgkjhfdjhtighgj iuhjuiuiiu9tij ,,hghfffhhjfdjhfhretjhhguuhhfhgiugughbnbhjguikjbjgkiiut8ihhgbhlgliguglljggyyuryuyugllygu6yfjyghjyllluytytyllgfyybbghjjjiyiuituiuiqhubijigio  jigug

Translation: "I love all my friends because you're you, and I know you do love me so much, because you're not grumpy....that's it."--Love Alice

Here's what we have been doing lately!

She prefers to comb her hair straight.

Between these three amigos there is an imagination running wild.

A little Rhino

Beautiful morning in the canyon.

Opps, I couldn't resist.  Insuring there will be no troubles on the trail.

Tyler's favorite thing to do...run down the canyon early in the morning.  What's 13 miles anyway?

Summer fun with friends

Caroline and Natalie.

Fun times swimming with the Reeses/Simmons.

Popsicles in a hot tub.

My very own Sprite.  Lucky Alice.

Evie Just being cute.

Movie theater with the Larsen family.

Summer school art show at BYU.

Checking out Natalie's art work.

BYU planetarium with cousins and friends.

Picnic on campus, unfortunately I left the sandwiches in the fridge...hardly a picnic. 

BYU has some awesome grass hills to roll down.

Good times with great friends.

Last day of summer school.

Natalie and her classmate.

Miss. Reid, Natalie summer school teacher.

Dollar store; shopping for each other's up coming birthday gifts.

A tea party...plenty of fun.

Matthew and Eli....buddies.

The girls way of sleeping...the last little spot on the right was either Alice or Evie, but it didn't last long.

They boys way of sleeping.

Looks comfy.

Lisy's college roommates and families.  The Larsens from Chicago, and the Ransoms from New York.  It was a great time to be together.

July 24th
Spending Pioneer Day with the Cutler's.  Jessica provided a great activity for the kids.
Putting together pioneer cabins.

Lovely pioneer cabin, Alice.  

Natalie, Addie, and Cooper

Not so excited about building a cabin...maybe just tired.

An awesome firework show provided by the Cutler kids.

Matthew loving the fireworks

Alice and Cooper

Jessica, Lisy, and Evie

The following movie Tyler put together of the kids hiking to the "G".  We were lucky to have our dear friends visiting and made some great memories together.  The hikers are; Tyler, Natalie, Matthew, and Blair.....Will, Eli, Penelope, and Lucia.  The music is especially great. ;)  It makes it seem like a Mt. Everest feat.

Lisy

Holding Steady

This past week clinic turned out to be more good news. The doctors have given Alice a green light to come off one more medication. Such a relief to us that she continues to improve. Not to mention having to deal with one less medication makes every bit of difference in the morning and before bed time. In addition, the conversation turned to discussion on when Alice can have her central line removed.  A major factor in this decision is her proving that she can maintain good blood levels.  Yet, this is very exciting to me. I mean, its been over two years now that she has had a hole in her chest, and more years with a PICC line in her arm. I doubt she can remember life without having to consider getting in the bathtub or jumping on the trampoline without caution because of it. Hopefully by the end of summer it will become a reality. When that happens, its hard for me to believe that this chapter in our lives may be coming to a close? Wow. I really can't imagine it now. I'll believe it when I see it. Nevertheless, its good news and we will ride that wave until we can catch another.

Counts:
ANC 1500
Platelets 167
Hemoglobin 9.5


Below is a clip of Alice performing her first magic trick of the disappearing sucker. Still needs a little work, but its cute just the same.

Tyler

Would You Rather?

This past week Lisy and I laughed at a few things the kids have said to us. Mostly because of the game "Would You Rather". The kids have used this game as a platform for their own "would you rathers". Not all, but some of them have had enough weight to give me pause or laugh. One in particular from Blair directed towards Lisy caused me to stop what I was doing and wait for her answer. It was a funny moment to say the least. Moreover, I thought it would have some comedic value if we posted some of the children's "would you rathers," and if you should want,  you are more than welcome to answer them in the comment section.

Tyler

We're Still Here

It has been 18 days since our last post...time to catch up!

Thankfully, we are happy to report that from a health standpoint things have been fairly calm around here. Natalie, Matthew and Blair spent a week at Camp Hobe'....nothing but good came from their time at the camp.  We were so nervous to send them and worried it would be too long, or that someone would get sick or homesick.  This was an amazing experience for Natalie to be immersed socially, and to meet other children with similar challenges.  She even met a few other kids with Celiac.  Matthew and Blair equally had a blast.  We look forward to attending again next year.

Some days ago we took Blair to the doctor because of fevers and a cough.  He has walking pneumonia.  Poor guy.  He is taking some antibiotics and is feeling much better.  His fevers have subsided, thankfully and his cough is minimal.  He should be back to himself in no time.  It was strange to see him pass up the opportunity to go swimming because he was too tired.  Truly one of his biggest symptoms was just plain ole tired.  He could hardly get himself off the couch.  After 10 days of this, we decided it was time to have him see the doctor.  For a while I was worried he may have contracted West Nile virus, as he was bit by several mosquitoes...the symptoms are similar.  Glad to see him feeling better.

Alice has been to Clinic three times and the Orthopedic since we posted last.  Quick summary; Her leg is great, she no longer needs the walking boot...still caution is required when outside, etc.

Clinic visits have been simple, her counts are recovering from the blood type switch over (if that is what her trouble was).  She has slowly pulled her hemoglobin up on her own.  As you can see below, all her counts have improved...ANC still strong.

Counts on June 27th:                      Counts on June 11th:
ANC 3000                                     ANC 2900
Platelets 180                                   Platelets 158
Hemoglobin 10.7                            Hemoglobin 9.5
Retic 2.6                                         Retic 4.69 (Normal Range .5-1.5)

Lisy

Camp HOBE' 2014

Last Day, final gathering.

Matthew with his counselors

Alice went along for the ride.

Natalie's group

Nurse Heather

Natalie and counselors

New Friends.

Located in Tooele

Love this picture...The medicine pick-up station.  Only at Camp Hobe can you drop off your children and know that they are getting their medicine and being well cared for by doctors and nurses.  When we dropped off Natalie's list of medicines, it was so simple because the nurses deal with this stuff daily and knew just what to do.

Kitty Kat Bar, Happy Birthday Matthew and Camp Hobe'

Since my last post, Alice has been to clinic twice and the orthopedic once.

We were happy to learn at her orthopedic visit that she no longer needs a hard cast, she received a walking boot.   She enjoys bath time more now, as we can remove the boot; also sleeping is easier without the boot.  I guess the downside to the walking boot is making sure it stays on her.  Likely she will not require the walking boot by her next appointment in a weeks time.

We are a little discouraged to report that Alice's hemoglobin was down this past week in clinic.  Not low enough to transfuse her but likely going in that direction.  She was checked in clinic on Monday June 2nd, and by Monday June 9th we decided to have her hemoglobin checked again, just because we thought she had dropped a good amount over the weekend.  She was seemingly more weak and complaining of headaches.  So, it had dropped a little but not too much.  When we return in two days for another clinic visit we will see what her level is again.  Possibly she needs more hydration, as her IV fluids are stopped.  We try to get her to drink plenty but in reality it isn't sufficient to the IV fluids she was receiving.  We are going to bump it up with some Pedialyte.   Dehydration can cause similar symptoms to anemia.  However, in the past couple/few weeks Alice has been nauseous again, vomiting between 1-2 times a day.  Her stool is loosening and becoming more frequent.  June 4th we ran several stool labs including a whole panel of parasites, etc.  Everything came back negative including Cdiff (clostridium defficile), norovirus and rotavirus.  Is any form of dehydration causing all these symptoms, is it diet related, or could it be the beginnings of GVHD?  At the moment we feel her gut is still healing and with some more hydration and a gentle diet these little bumps in the road should smooth out.

recent counts:
ANC 3000
Hemoglobin 9.4
Platelets 184

Woah, who's idea was this?  BB gun trouble!  Happy 9th Birthday Matthew.  It's been a long time in waiting...are kids ever old enough for such things?

Just checking out Natalie's new shades.

Dropping off the older kids at Camp Hobe for the week.  Alice will be ready when she is older.  Camp Hobe is offered to kids like Natalie and their siblings.  It's a place where these kids and be like normal kids.  Swim, play, and have fun with others who understand what it is like to be sick in the hospital and relate to one another.  Also siblings are invited as they are as much a part of the journey of such lifestyles.  I was totally fine when I dropped them off, but once I came home and walked inside my house I immediately got so homesick for Natalie, Matthew and Blair.  I started crying and wondering 'what in the world did we just do'.  Tyler was missing them too.  We sat around accomplishing nothing, once we started cleaning the house we started to feel better.   Natalie was so excited and nervous to go.  We hope this will provide a great social outlet for her, having her brothers there will help tremendously.  The camp staff is amazing.  They are volunteers, many nurses (some we know from ICS), doctors, counselors, and more.  They will be in good hands.   

Have fun Blair.

"Mom, you can go now...I'm ready"

The group at Camp Hobe.

More Clinic.

Just for fun and for memories:
Every day since Alice had some bites of a Kit Kat bar last week, she has been asking for a "Kitty Kat Bar", she loved it.  It's all she can think about.  For a very long time before and after her diet returned, after several months of not eating, she wanted nothing to do with sweets.  Things have changed.  She loves chocolate, ice cream and all the things 'good' to the mouth.  She loves Honey Nut Cheerios, Marshmallow Mateys, Frosted Mini Wheats, a good fresh crispy apple, and 'Awesome Chicken' (chicken cooked in a little apricot jelly).  We try not to buy the cereal too often, usually breakfast is an egg, but she will go for the cereal anytime during the day when it is available, of course with almond milk.  Maybe this diet doesn't sound so gentle? Hmmm...

Evie and Matthew's favorite thing to eat is raw oats with milk and honey.  Blair doesn't always express his favorites, he's happy with whatever.  Sometimes he likes to just stroll into the kitchen and eat whatever was left behind from another.

Natalie is in love with all the varieties of Chex cereal, except the plain corn flavor.  Apple Cinnamon is the most desired.  Natalie will do a frozen blueberry shake with all my secret healthy ingredients above all other foods.

Lisy