The Natalie & Alice Fish Story

We are the Fishes. In 2011 two of our five children; Natalie and Alice were diagnosed with a rare gene disfunction called Leaky SCID (Severe Combined Immune Deficiency). Their condition is so rare that only two cases are reported in the U.S. each year. Both girls have endured much, and have spent most of their young lives in and out of hospitals due to common illnesess a healthy immune system would overcome. The required treatment for our girls is a bone marrow transplant.
Although the new marrow could mean a normal life for them, it will be a long and arduous road. This blog is to share our experience as parents and the courage of our children.

Friday, March 30, 2012


Today was a GOOD DAY!!

Hooray for Natalie--Today is Day plus 100! We can't believe that it has been 100 days since Natalie's transplant. We never did post her Transplant Birthday Video, so in memory of her Transplant here is the video.

The second video is of Blair shortly after he left the operating room, he had told us moments before we took this video that if he wanted a drink he would give us a thumbs up and a thumbs down if he didn't want anything. And to clarify, McKay is his cousin.

Originally when we spoke with the dietitian about the girls diet, the general rule is that by 100 days they can come off the low microbial diet. This means they can have restaurant food etc. Still they need to be careful and that which they do eat from restaurants must be freshly made.

Natalie has known that 100 days is a milestone, and so she has been counting down. In her mind we were going to celebrate by going through the Wendy's drive-thru. I warned her that we needed to double check with the doctors before we did so. I called them, left a message, and the next 30 minutes she waited by the phone. When the BMT clinic returned our call they asked what the question or concern was...I was happy to say we were not calling to report a fever, just a request for a hamburger.

The answer was not yet. Oh how upset Natalie was. She stormed off to her room and griped about how mad she was that it's finally 100 days and she still can't eat what she wants. I tired to explain to her that a homemade burger is much better. The truth is when you know you can't have something it almost makes you want it more. We hardly eat out anyway, however, maybe that is why it seems like such an exciting thing to begin with.

We decided to celebrate by getting a movie from Redbox. We watched The Adventures of TinTin, and Natalie really liked it. We did some art with colored pencils, that can be changed to water colors. The boys made the number 100 out of play dough for Natalie. Natalie also was able to spend time with Grandmother Fish putting together some things for Easter. She ended up having a much better day than she had suspected in the end.

Today was a great day for all of us.


We are looking forward to watching conference together!

Thursday, March 29, 2012

Super Heros

I tried something new today with Alice, an attempt to learn from my mistakes of yesterday. Yesterday wasn't our best day, I tried three different times to give Alice a nap. She was very tired, however, wasn't excited about taking a nap. I offered to lay by Alice until she fell asleep. Tyler looked at me like...yeah right! He must have known that disaster was calling. Each time I tired to lay next to her I feel asleep and she ran away. Once, I woke to her giving me a stuffed animal to sleep with; she then came with a diaper, wipes, and A&D ointment to change my diaper. I thought to myself, well that didn't go over very well. I decided to quit trying, peel myself out of my p.j.'s (thinking I had a good excuse to stay in them as I was going to lay with her anyway) and just take her for a drive in the car. That always works. So today, the new thing was, I took her for a car ride first and our day was much nicer. She wasn't as cranky and everyone was happier.

When I came home from our drive, Tyler had the others fast at work with their school assignments. While Natalie and Matthew are doing their Math and Spelling, Blair sneaks onto their RazKids website and buys things with all the points they have earned reading the books. Natalie keeps after him, because the items he purchases are downgrades from what she already had. I have a hard time being serious about it because for some reason I see a glimmer of humor in it, I guess the saying of one person's trash is another person's treasure seems to apply, especially to the children.

Natalie told Blair today that he needs to do things for himself and not keep asking her to get him things--he said, "I don't have the right brain for's the wrong one." I happened to only over hear his answer, I quickly stepped in to see what the fuss was about. I was surprised to learn of their conversation. I tried to help Blair understand that his brain is very good and we just need to teach it some tricks about being more independent. I tend to think his brain is the right one, and that he just needs to have a little more fire under his feet. It takes some great amounts of creativity to motivate Blair with things that seem boring to him.

Once Tyler needed Blair to carry a box down the stairs, so he asked him to help. No response from Blair, it seemed as though it went in one ear and out the other. Tyler proceeded to explain to Blair that the box was full of explosives and if he didn't get the box downstairs to safety in 30 seconds it would explode and create a great deal of disaster. He jumped right up to fulfill the assignment.

Parenting one child can be a challenge, however, no two children are alike--to find what works for each is an art only to be mastered over time.

As parents we are learning new things each day. By the time our children are grown we might have some great tricks under our belts.

The past couple weeks Alice has been asking to watch Superman, not sure why...she talks about it all the time. We watched it a week ago to satisfy Alice's desire and then a few days later the children received some darling capes in the mail. Wow, great timing. Tyler played the Superman soundtrack as they strapped on their capes and they loved it. I'm so glad I got some pictures. The children have been flying all over the house since.
Alice thinks if she blows air with her mouth she is actually flying. I had to catch a video of her with the cape. It is cute when she runs--in her mind she is going very fast I'm sure.

I forgot to mention on Monday's post that Natalie's fluids at night no longer have Magnesium. Alice has done well the past couple of days without taking Zofran. She has kept all her medications down without the assistance of Zofran. This is a big step for her.


Super Evie!!

Tuesday, March 27, 2012

A good Day for a Hike

Matthew has been asking to go on a hike for weeks, we finally decided to round up the baby packs and head up to the hills. The doctors had given the ok for us to do so if the conditions were right. So we cleaned up, steralized and masked the girls. The trail we took is only a few minutes from the house and was the perfect little hike for the kids.

It was beautiful, Tyler was able to look over the hill to his old house in Alpine where he grew up. The kids enjoyed the scenery, especially the big horn sheep. It was hard to hold back the urge to sing out "The hills are alive with the sound of music". Had I actually done that I would have scared every living thing off the hill. I hope someday, maybe in heaven, I will have a beautiful singing voice...hmm maybe not!

Natalie did well, she became tired easily, although, she did awesome for having recently been through so much. Alice was carried the whole time, but every once in a while she would pant like she was hiking with the rest of us. She played the part very well.

I would say the hike was the highlight of our day...and possibly week!

Monday, March 26, 2012

Clinic and Gone Fishing

Here are some pictures of our clinic visit.

At Clinic today, we found that the girls numbers are steady, Natalie's ANC was 1600 and Alice's was 1400 and heading in the right direction. They both received their IVIG med, which took most of the day. Natalie got a dressing change and an x-ray on her elbow--she has a bump on her left elbow and so we are just being careful...nothing came of it. Tonight I filmed Alice fishing with her medicine, something she loves to do. I'm not sure why, but the sound didn't work on this.

Saturday, March 24, 2012

Improvment comes over time

As of yesterday (Friday) we have been home together for three weeks. When I think back to the beginning of Natalie's Bone Marrow journey about 5 months ago, it seems so far away. I can't believe we have come this far. Often I will try to measure the girls' progress each day, however, on a daily basis sometimes I wonder if they are in fact actually progressing. I decided to compare today with the first week Alice came home. Huge improvements just in the past three weeks. It's amazing the changes that have happened in the last several weeks. It's almost hard for me to remember the miserable times we endured, because there is very little evidence of pain when I see both Natalie and Alice thriving today.

Last night I had the opportunity to speak at a dinner held at the hospital. It was sweet to be there. I will always have a huge place in my heart for Primary Children's Hospital. Of course we have had very trying times there, but for some reason when I walk those halls I feel this amazing overall sense of peace and gratitude. I think I can say from experience that angels walk there. If I were an angel you would find me at a children's hospital too.

During my speech I mentioned that Tyler and I have been through some very hard trials with our girls. I also mentioned that having two girls undergo bone marrow transplant within 4 weeks of each other has not been the hardest thing we have done. What I mean is, the support, and prayers that have been poured upon our family have carried us. Sometimes I wondered if my feet were actually touching the ground. I know that strength comes in numbers. We are so thankful for the prayers being offered...the power of prayer in my mind is ever so tangible. It's easy to look upward when you have so many cheering you on. I know that the girls feel the same way.

Natalie wrote a note for her friend Sara whom she had met during transplant. Sara is on her third round of Chemo battling leukemia; I was to deliver the note to her room. I have been so touched by the strength and courage Sara has shown to Natalie. Sara rides her scooter around the unit waving to other patients through their windows...again, another memory that will be with me forever. Right now Sara may not be feeling well enough to ride her scooter, but I know she will soon.

As I was leaving the hospital that evening I felt strange to be there alone without one of our girls, but I had a moment to look at the building from another perspective and wonder what might be occurring in each patient's room. I also watched the life flight helicopter carrying a little body, land on the roof. I paused before driving away and offered a little prayer in my heart for that little person, and the many other little people behind each patient window. I know prayer is real and powerful, I sensed in my heart that my prayer was embraced.

Often I feel like a tiny little speck on this giant planet, but when I imagine looking at the earth from a point in space I can see things enlarged and they become more clearer. I understand that what matters most is not the destination, but the journey. Because the destination can only be determined by the journey.

Thank you to all our loving family and friends, and the many people we have not met. :)


Wednesday, March 21, 2012

Situps and Cook Books

I made the mistake yesterday thinking that I could do a stomach workout. This morning I woke up needing help out of bed. All day,I walked around as if I was in need of a cane . Each time I picked up the baby, a small yelp escaped. It would in turn startle Evie, and then she would start to cry. We both cried. We cried so much it was like we were trying to out cry each other. I won. It was a rough day. Oh how youth seems to be so long ago now; when we could play all day and wake up the next morning and play all day again without the pain of a recovering body.

Alice was cute....I hooked her up to her IV line tonight with with her medicine ball. She through it over the side of the bed and said, "Look Dad, I'm fishing." I quickly grabbed a hold of the line and gave it a little tug, her eyes lit up and she pulled it in.

Natalie is anxiously waiting to be able to go out and eat fast food. She has been so patient, however tonight she got a whiff of Little Cesar's pizza coming from the neighbors and begged to have some. She only has a couple more weeks until she will be able to do so. We are so excited for her to get back to normal, and fast food in her mind is the first step towards it.

We have had several inquiries regarding the E-book & hard copy cookbook and where to get it.
This is the address:​2012/03/​blogging-for-fishes-buy-now.htm​l

We are so grateful to for organizing this. Thank you.

In addition thank you to Tami Goeckeritz for organizing the online auction that many of you participated in. We are so grateful for your love and friendship.


Tuesday, March 20, 2012

Kids Exercising

This morning Lisy and I got the urge to exercise....not much came of it but the kids got into it. However Blair and Alice had enough after a short amount of time...just like their Dad.

Alice is gaining more strength and was in the mood to show us how well she could walk. It was cute when she showed us how she can run too....Lisy got it on video.

Throughout the day, I reflected on the feelings of gratefulness I have for the love and support all of you have given us. I will always pause when I think about how all of you made a life changing event, that could have been "back breaking," into an experience we will no doubt look back upon now as being one of the greatest moments in our lives. Your examples to us have further instilled the desire to be better. We will forever be thankful to your rescue.


Monday, March 19, 2012

Clinic Visit and Counts are Up!

It was a challenge to get both girls to look at the camera at the same time.

Natalie and Alice had a clinic visit today and we received great news. Both girls are doing much better than last week. Alice's ANC is at 3000 and Natalie's is 1000. The booster shot they gave Alice last week really made a difference, however, with Natalie she came up 400 points without any help. Natalie is able to come off a medication that helps with liver function (Actigall). Alice is able to come off a medication that helps with stomach function (Reglan). Alice's steroid will taper down another step. Both girls will bump up a step with their anti-rejection medication (Cyclosporine). It is very normal to go up and down many times with the Cyclosporine.

Natalie is only two weeks from her 100 day mark. She keeps asking when she can have a hamburger from Wendy's or something like it. I suppose just because she has not been able to eat fast food or any restaurant food it makes her wish for it more. Once she is able to drink the full amount of her fluids daily and maintains stable counts she will no longer need the Broviac line. Although, she may not have a line in the near future, there are yet many blood draws to least for six more years.

Alice's line is repaired and working wonderfully, another tender mercy. It is common for a line to clot when broken, however, Alice's did not. It would have been a bigger deal to fix had it clotted. We stayed at the hospital only 2 1/2 hours and were home by 2:30 a.m. Not too bad!!
In fact she did not want to leave...she was ready to stay for a while apparently. Upon arriving she asked for a pillow, crackers and cheese, and the Backyardigans; a version only the hospital has. When it was time to go home she was sad, of course until the nurse gave her the Backyardigans movie to keep. I told her we needed to hurry home to show it to Dad...that was the ticket, she then cooperated to put on her coat and mask to make the late night drive back home.

Tyler and I received a letter in the mail today from the CEO of the American Red Cross (Lewis & Clark Region).

Here is what it said:

"I want to express my sincere thanks to you all for your support of the American Red Cross. Through your efforts 475 donors came to donate including 145 first time donors. Your situation has touched the hearts and lives of many others and is a true example of the Circle of Life."

We are not to receive this gratitude alone. It is because of many sweet and amazing people who came to donate that made this happen. Thank you to all who helped organize the blood drives and especially for our sweet friend Wendy who put forth much time into this endeavor. We also want to thank the many people who came to donate and were not able to due to time. It's very humbling to imagine the great blessings that will come to those who will benefit from the blood drives, including our girls.


Saturday, March 17, 2012

Broviac Snap

Just now, Lisy is on her way to the hospital with Alice due to her broviac line snapping. The result of the break was due to Lisy picking Alice up and the line being caught in the couch. I wish it could have waited to be fixed tomorrow, but the doctor said to come in right away to have it mended. We put a clamp on it and away they went. I imagine it will be a long night for them both, but I expect them to be back in the early morning hours. Alice was cute as she became excited when we told her that she would be going back to the hospital tonight. She said,"Dad, I go home." Wow....we were really at the hospital too long.

The way the line broke was mild compared to what could have happened. Luckily when Lisy and I changed her dressing last we secured the line tightly, which possibly prevented it from pulling entirely from her chest. At first we called the homecare nurse and they told us to go straight to the ER. Because Alice is a Bone Marrow patient we are not to be caught anywhere near the ER to avoid the risk of exposure to illness, so Lisy called the on-call BMT doctor and it was arranged to go straight to the ICS unit where the IV team could repair the line.

This morning, all the kids could talk about was the leprechaun trap they were going to make. Matthew was on my case about it all day. He opted for "ye 'ol box and bait rabbit trap." A true and tested method for sure. Instead of a carrot he placed chocolate coins. We'll see if it is successful tomorrow morning.

My brother Michael. the Leprechaun

Alice was into headbands today. She saw a lock of hair we had saved and tried to put it back on her head. Then she asked to wear a bow, so Lisy showed her the stash of headbands and bows...she had a great time decorating herself.

Thursday, March 15, 2012

A Good Day

Well it happened, we finally feel like we found some rhythm in our routine. I woke up tired from another long night, but I promised myself I wasn't going to nap or feel sleepy, until I accomplished the many things I've had on my list. I love to work, and lately I've only had time to care for the children every moment day and night. Although taking care of the kids is first priority, it does feel good to get stuff done so that I can feel productive. I know my enthusiasm sounds as if I invented something ground breaking, but I actually just organized the toys and clothes and the usual meds. Believe it or not, this is a big task for us right now. :) Grandpa Fish came and helped a lot in the garage and helped sterilize bathrooms, etc.

Too often I dream that I can stop the clock and have more time to do things...I would work myself to death I'm certain--Although I would spend many hours just writing thank you cards to so many. I know it's not necessarily possible but in our hearts please know we have many lines that can't make it to paper...let alone the post.

Tonight when I took another stinky diaper to the trash, the can was already to the street; (hooray we are not going to forget the trash this week) Once outside in the dark I stopped for a moment to take in a deep breath and looked upward. Wow, I noticed one star in particular much brighter than the rest and I immediately got the chills. I usually do every time I stop to admire the heavens above. However, this time it felt different. It's amazing what we live under, I always try to imagine that I can see for thousands of miles into space...I wanted to be an astronomer as a kid, as well as a marine biologist, an olympic gymnast and even the president of the United States, well I think I currently have the best career anyway.

One of the neatest things I've done was to look through by brother's telescope to see with my own eye Saturn's rings. Woah! I remember the days as a kid when we spent more time outside than inside. Just because the sun went to bed did not mean that we had to, things may have been a little different then, but it wasn't unusual for us to sneak blankets out to the trampoline after my parents went to bed so we could sleep under the stars. Maybe life has become too busy for things like that, but hopefully not. Maybe someday Tyler and I can take the kids camping and such without worrying about getting sick.

When I saw the sky I thought of this quote, so I wanted to share it. "As truly as we must face unpleasant realities all of our days, let us recognize and praise the thousands of beauties of life around us." --Paul H. Dunn

Okay, so I will now give an update on the girls. Alice is no longer crawling...doggie days are over. She is walking everywhere and it is wonderful. She will be able to drop another medication now that her body is moving more. She wants Mom all the time...if someone stands between us she will cry that she can't see Mom anymore. We are hooked at the hip day and night. We were worried that she was getting a fever the other day, but nothing came of it. She has been extra fussy so we are watching her closely. I think she is feeling better but at the same time becoming aware of how much more she still needs to heal.
Tyler and I had to change her dressing early (it's only been a couple days) because it started to peel off. She was not happy about that. We are getting better at this dressing change thing; as long as we have back up supplies for all our mistakes...we are good.
Make A Wish called today--Ann Marie ;) The girls have their keys from Make A Wish and they are protecting them for the day they will unlock their wishes. Oh what a beautiful time that will be for Natalie and Alice.

Natalie has been having a great time filming herself being silly on her iPad. She then shows the videos to Alice and the two laugh and laugh. Natalie took her notebook with her today on a bike ride and decided to draw pictures of everything she saw. She had all kinds of things in her little notebook, later I found out that she wanted a flash light to shine into a dark tunnel so she could draw some spiders. I was so glad she couldn't find a flashlight...too many germs in that tunnel.

Here is a video of Alice eating a banana...had to get it on film-before transplant she would not touch a banana, now she wants them all day long.


P.S. One bright little star gets me so excited....does this mean we have been in quarantine too long?

Wednesday, March 14, 2012


I'm sorry for the tardiness in the posts lately. The days are so full with tending to the girls that "old man" time somehow becomes agile enough to avoid our grasp each day. Speaking of time, I recall reading a certain book speaking on the subject. It said in various terms:

If we are eternal beings, then time is not our natural dimension. Therefore we can't help but notice its constant presence or absence. This would then further explain why the passage of time for us seems to go too slowly or too rapidly.

Makes sense to me.

Last night Alice had a hard time going to sleep, most likely because of the medication. She is off of her TPN now, and I feel it has improved her nights as we don't need to change her diaper four of five times over. Natalie however is the one who seems to be complaining more about Alice's nocturnal activities since they both sleep in the same bed. Many times it is Alice who begs Natalie to get Mom for her when she needs something throughout the night. Natalie is so good to get up with her pumps and medicine in hand, walk across the hall and tell us Alice's pump is beeping or, Alice needs a drink. Last night was no different except that there was so much going on that when we woke up, we found ourselves in different locations throughout. I ended up on the couch, Lisy was with Alice, Matthew an Natalie were in our bed, and the two youngest (Blair and Evie) managed to wake up in their own bed. I don't know how it happened, just did.

We noticed this morning that Alice felt a little warm and was a little more irritable than normal. She had no fever, but we are keeping a close watch on it as these things seem to escalate quite quickly if we allow it to. I always dread the moment when it comes to deciding whether to take the girls into the hospital or not. Its as if we do all we can to delay it; much like avoiding the inevitable school essay up until the last minute. Sometimes we get it done it time, sometimes we look back and see that we could have done a better job of it.

On a parting note: I'm not ashamed to say my conversational wit has improved since taking in a few episodes of Downton Abbey. Many thanks to you, Maggie Smith.


Monday, March 12, 2012

Counts dropped--Alice Walking

They start out nice and won't last long!

Only minutes later...this is what happens, and we are just getting started for a long night.

Natalie and Alice went to clinic today. Each time we go to clinic we have plans to visit the unit to say hello to the nurses and others we have become friends with. By the time we are done in the clinic everyone is in tears and anxious to get home....especially today.

Both Natalie and Alice's numbers dropped. Natalie's ANC is 600, Alice's ANC is 100. They are doing great otherwise. Natalie will stop taking a certain type of antibiotic (Septra) that should help elevate her numbers....and Alice on the other hand was given a nasty shot in the leg to artificially boost her numbers. No fun at the clinic today, although, Natalie was kind to the doctors and nurses. Thanks Natalie! Oh yes, I must not forget-they both had their dressings changed. The only good thing I can say about that is it's over for another week...the nurse did a great job and saved us from having to do it at home.

Good Changes:
Alice no longer needs TPN (iv nutrition)
Alice's steroid medication will taper slightly
Alice's Graft vs. Host rash has improved
Natalie's fluid level decreased by 1/3rd

Not so Good Changes:
Counts dropped for both girls
Cyclosporine medication increased for both girls

Yesterday, the life flight helicopter flew past us while we were outside and Alice noticed it. Her hospital room had the best view of the helicopter as it would land and fly away. I actually missed the hospital for a small moment when I watched the helicopter pass by. It reminded me of all the great things that have happened recently. Countless blessings and answered prayers, many new friendships, and hopes for a healthier future. Usually when I feel overwhelmed or discouraged I start looking around and notice the many good things I have--in an instant I feel gratitude; it's very difficult to be sad with a heart full of gratitude: many people have helped fill our hearts...thank you!

Saturday, March 10, 2012

Breaking Out

Today I realized how difficult being in quarantine is for my children. Case in point: my sister called me in need of some assistance assembling an office desk they had recently acquired. My son Matthew overheard my conversation and begged to go, so that he could play with his cousins. We wanted more than anything for him to be able to, but we just couldn't take any chances of him bringing something home the girls would catch. He of course was sad, and threw a healthy fit in frustration. I left a few minutes later in a rush so that I could get back and cook dinner. The drive would take close to twenty minutes. On approaching my sister's house, I get a call from home asking if I took Matthew with me. I replied "no," and that I thought Matthew had probably went to hide somewhere and was in the process of simmering down. I hung up the phone; as I made a left handed turn looking to my right, slightly over my shoulder, I caught a glimpse of something that startled me. It was Matthew's legs, laying perfectly still as if he were a character out of a gangster movie settled in the car's trunk. I gathered myself enough to get it on video.....he had no idea I got him on film. I explained to him later the many dangers he may have encountered had I not discovered him there. However, I still laughed at his version of a "jail break."

Friday, March 9, 2012

Pancake overload and a dog

Every day it's pancakes...even for dinner. Anytime we ask Alice what she would like to eat, her response is always pancakes. One time I couldn't cook them up fast enough so she just dipped a spoon into the powder mix and ate it like cereal. Of course I had to toss the entire bag after that. She is crazy for them. The last few days at the hospital she would order pancakes for breakfast, maybe it just tasted good to have food again. Now she is hooked on pancakes.

Since Alice has been home she has turned into a dog, in her words, "I'n a dogie." Because she has to crawl everywhere she figured she may as well make it something fun. Every once in a while I will feel something licking me, sure enough it's our dogie. I have to tell her not lick or pick things up with her mouth because it can make her sick, but what kind of dog is worried about things in their mouth. This alone has motivated us to help her walk even more.

Major improvements with walking today. She walked with help from only one hand. Hooray!

The medicine thing is not our favorite part of the day, neither for Natalie and Alice. Alice calls it "yucky medicine" and tonight I was starting an infusion and she said, "no, that's yucky," I told her, "it isn't yucky because it doesn't have to go in your mouth," then she said, "it's yucky PICC line medicine".

My phone rang mid-morning and Alice immediately said, "it's Papa Schellenberg," I looked at the caller ID and sure enough it was. They came by to visit and when it was time to leave she repeated over and over, "no grandma don't leave me!" Maybe we are deprived of company. ;) Soon enough this will be a memory--besides when are we ever going to have a perfectly valid excuse to be home 24/7 all together again. I know this time will be full of lasting memories. I'm certain our family will discover in years to come that this time of quarantine has instituted a more solid foundation for the rest of our lives. If it doesn't make us weird. :)

Natalie did something new for the first time today. On our short outside adventure today she learned how to ride a two wheeler bike. Yes, she is 8 and just learning. It's something she hasn't felt the urge to do until now. Even until she was baptized she hadn't had her head under the water entirely (because of ear tubes). Anyway, what I am saying is that she is ready to take on the world. She understands that things are different for her. She talks about stuff she wants to do and see. I found myself a little emotional when she rode the bike, even if it was only 8 feet. I mostly felt emotional because I know that she has so much to explore and experience ahead of her. She asked me today, "how many more days until I can be like everyone else?" I told her it would be soon. She also said, "will I be able to touch anything I want?" I tired to imagine what it must be like for her to feel so trapped. Oh, Natalie I can't wait until you can feel the freedom of careless play. I know that a good healthy childhood makes for a good healthy adulthood. No child should ever be shorted of their childhood. She has done a fine job to compromise for substitutions in the meantime.

All the children except for Evie of course are having a Friday night slumber party. Tyler and I made certain we were not invited. With no surprise Natalie has her favorite Peruvian music on repeat. Keep in mind she is hard of hearing, so you have Natalie next to the player with it turned up decently enough, and Alice on the other side of the bed plugging her ears saying it's too loud.

Once they are asleep we will turn it off. I'm afraid now Tyler and I will be tripping over Matthew and Blair as we deal with the nightly chaos in the girls room with over flowing diapers and infusions being switched. Matthew made me understand that he won't mind as long as I give him a big kiss and hug each time I come in. He keeps a little stuffed giraffe with him at night and he pretends it's Evie. He asks if she can sleep next to her, but because I don't think that is a good idea he came up with his own. He loves Evie...sometimes he smothers her with love to the point of irritation.

As for Tyler and I, once the house is quiet sometimes we just stare at the wall, at some point your mind needs to think of nothing, right? I'm afraid our thinking of nothing is necessarily unproductive, and could be a waist of time, but wasteful as it is it's survival. As tired as we might be, it's a shame to go straight to's our only time to listen to nothing...what a beautiful sound it is!

Wednesday, March 7, 2012

Day 50 for Alice -- Day 77 for Natalie, getting closer

The medication routine is getting smoother. We are adjusting more each day. I spoke with the BMT clinic today and they said both Natalie and Alice can come down a little on their Cyclosporine medication, which is the anti-rejection.
The nurse came and adjusted Natalie's mag fluid infusion to run during a longer part of the night. This will eliminate one more reason to wake during the it can wait until morning.
Also they said that Natalie's vitamin D levels have dropped. Her new dose is now 10 times the old. This should help. Obviously the sun provides the best form of vitamin D, however, this time of year it's hard to find a warm non-windy day to be outside. Also both Natalie and Alice cannot be in the sun much because the chemo has made their skin very sensitive to sunlight. Even driving in the car with the sun shining through the window is a danger to their skin...they can blister very easily, and are at a much higher risk of developing skin cancer. Many new lifestyle changes ahead for us. We are going to keep the sunscreen business's profit margin plentiful.

The girl's oral medications...Alice's side is on the right. A fair amount more in medications than Natalie.

It's a bit of a chore keeping up with all the pharmacy changes, refills, deliveries, pick ups and supplies. Sometimes the deliveries come short of a supply. I have learned over the years to always ask for one more of everything in the event that something isn't delivered. I have fallen back on that cushion many times already. An extra set of tubing, or an extra needle have proven this idea worthy. Today I should receive the missing box that didn't show yesterday.

Last night when I tucked the girls into bed, I looked at the two of them as they share a bed, sleeping so gently, with their fluid pumps in the center of the bed, and thought to myself how sweet it was to see two little bald heads poking out of the covers. I am so grateful that they are home and safe. I sometimes forget all the craziness that has taken place over the past few months, when I see something so clam and sweet.

Tyler and I sat down with the children yesterday to discuss how we want to spend our time, while we are in quarantine. We agreed on a suitable schedule for everyone, including the two little ones...aka naps! I sat down a few weeks ago and wrote a list of all the things I could think of that would have been fascinating to me as a child. I have at least 80 subjects on the list. We call this list our discovery list. Each morning once the medications are administered Tyler or I let the children chose a subject from the list and we google anything and everything about it. Today they learned about tipis-tepees. Blair said that Indians are really good at making them, but now they live in a real house...and of course Matthew wants to make a real tepee today. I told him I would help him once he shot and skinned a real buffalo.

Natalie is hard of hearing due to so many ear infections. The doctors said the chemo may worsen her hearing as well. This has been a challenge in our family. We have to be so loud to communicate around here. When we read to the children we practically have to shout unless there is zero background noise. Evie and Alice make for sufficient background noise that is for sure. Natalie must say "I can't hear" two dozen times a day. I'm certain hearing aids are on the menu for her, as well as cosmetic dentistry.

What she has ahead of her regarding such things is miniscule compared to what she has accomplished already with her health. The major hurdles are behind us now.

On the other hand, Alice can hear a pin drop in a crowded room. She has been fortunate to avoid the problems Natalie has not.

All five children in one little place. We love it!

Alice is getting slightly stronger. We are trying to think of creative ways to motivate her to use her legs. I set up a picnic party on her table, she stood and played long enough.

Tuesday, March 6, 2012

The Day That Got Away

Today was one of those days that seems to happen where you simply go throught the motions and before you know it, the sun is setting. Lisy was able to take off for a while today and run some errands. I stayed back and held down the fort. It has been a struggle to keep things steril as we would like. It feels so good to be home, but there is still a dull fear I have that should I forget to clean a germ infested object; the girls could be infected and we find ourselves back at the hospital.
Alice threw a fit tonight as she pleaded with us to not hook her up to the TPN bag. We go through this each night. However, this evening she was spent. It took us a while to calm her down, but she certainly seems to gain strength in resisiting as the days go on. I don't blaim her. The video posted of her is at the end of one of her TPN doses. Matthew and Blair who make an appearance are doing, as of late, what they games. It is a struggle to monitor their play, as it seems to keep them occupied so well while we tend to the girls. I assume we will pay for it later, but these days we have to pick the battles the best we can.

Natalie is steady. She asked that I shave her head again. Her hair is coming in, but not as full as I thought it might. It will take time, and she is in no hurry for it to grow back anyway. However one of the meds she is on (cyclosporine) is causing her to grow in plenty elswhere. The video posted of her shows a little of where her hair is and isn't growing.

Monday, March 5, 2012

Clinic for Natalie and Alice

Today both Natalie and Alice had a clinic visit. Alice's first time back. When we drove up to the hospital she shouted from the back seat, "Hooray! That's my room". It was so cute. I'm glad that she still likes to see that place. She is so positive.

Natalie and Alice's numbers were the same today, interestingly. Both with an ANC of 800. A little low, hopefully next time it will be higher. Alice's calorie count will decrease in her TPN. She has been eating fairly well.

Tyler held down the fort at home while I took the girls to their appointment. It went well enough, could have been worse. I was only 30 minutes late...we are going to work on that. I spent 15 minutes just looking for my cell phone. Blair had it last and it was under one of the seats in the car. I had made some food for the girls to take, something safe for them to eat, but it wasn't a big hit. I ended up eating three peanut butter and jelly sandwiches. They had some packaged snacks at the hospital. They eat two bites of something and are full.

Alice cried most of the time we were in clinic, I finally figured out why once we got to the parking lot. She needed to throw up and was holding it in. Needless to say the stroller took a bit hit. I'm just glad it happened before we started down the freeway. She soiled her lines, so as soon as I got home I changed the caps to prevent any germs from getting in.

The doctor suggested taking the kids outside while it was warm, and not windy. We bundled them up warm and found a nice trail to explore near the house. The kids rode bikes and big wheels. Blair's big wheel has a flat...ya know the plastic kind of flat. After a while it started to become obnoxious, but it was great because it made him work that much harder and was able to fall asleep easier tonight.

The best part about today was being outside. Tyler and I loved the scenery of the mountains, the fresh air, and most of all the fun chat. The kids went nuts over the jets flying above. It made me realize how simple things can be so exciting. Maybe we need to get out more :) That will all come in time. This week's weather will be good, so we will take advantage. It's a little tricky to find the proper window for safety, but when it happens it's wonderful.

Last night was a little better then the previous, however, after being up with Alice for some time I just couldn't stay up any longer. I told her I would be right back, I went back to bed and said to Tyler, "can you take it from here?" He got up and took it from there. My next memory was me trying to figure out where I was. I had woke moments later half way into bed, I was too tired to actually get myself tucked in. I tried for 5 minutes to orientate myself. I wasn't sure which bed I was in. At some point I had been in the boy's bed and the girl's bed. I finally lowered my foot to the floor to see if I could touch. Our bed is high off the ground so I knew I would be able to tell instantly by how long it took my foot to reach the floor. Once it touched I took a huge sigh of relief that I was in my bed and then snuggled in nicely. It was great. As for Tyler, I'm not sure where he ended up. Maybe he only made it to the doorway.

Someday we are going to laugh at all this. I hope so anyway! :)


Sunday, March 4, 2012

Establishing a Routine

Now that we are home; we are finding out there is still an adjustment period required to get back into what we would call a normal routine. It really does feel different when I realize that we do not need to figure out logistics of going back and forth between the hospital and home each day. Now it is a matter of staying on top of the medicine schedules for both Natalie and Alice. Also we have to keep a very detailed record of everything Alice eats and drinks to the ounce. Alice is required to take several different types of medicine throughout the day and night. Natalie is down to around five. Lisy and I tag team it the best we can though out the night. We utilize both cell phone alarms to wake us up at different times to switch meds and flush IV lines. Last night I made a minor mistake in not dressing Alice with an overnight diaper, thank goodness for mattress protectors. Both she and Natalie require a 1000/ml of fluid throughout the night. Natalie, of course will get up and go to the bathroom when needed, but Alice....well, she "swamped her canoe". So today we are washing everything. I should have known better. Tomorrow is clinic, where we will take both girls in for a checkup. Hope to have news of more progression tomorrow.


Saturday, March 3, 2012

Second Day Home for Alice

Here are some pictures we didn't have time to post yesterday. We were having too much fun being together.

Just enjoying her room for the last time

one of many loads

Empty spaces can be so fun

Having everyone under one roof has been wonderful. I feel such a relief knowing that all my energy can be spent in one place, I don't have to wonder what is going on at the hospital or at home at the same time. It still has not sunk in yet for me. I guess after 80 plus days in the hospital I will have to remind myself that we are stationary now-and together.

We were so excited to take Alice home. We will miss many things about the hospital. We have become so comfortable there and will truly miss all the people who we have come to know so well. It is a wonderful place.

Many visits in clinic yet to come...possible short stays in the future, hopefully not.

Last night after we had dinner and settled down for a second, we had a couple hours before the nurse came to the house to sort out all Alice's meds. We let the kids just gather around Alice on the floor and adore her. She was laughing at everything, soon we all were laughing. It felt strange to look around and count five children in one spot. I remember looking at Tyler across the way on the opposite couch and thinking to myself...this is Heaven. It was a peaceful happy feeling, until of course nobody could agree on the same game to play, and that peaceful heavenly feeling sort of slipped away ;)...well it was still lovely, just louder.

Three hours after the nurse came we finally had everything organized. Alice has almost double the amount of medications as Natalie. It will be a circus around here keeping track of the medications and infusions. We need at least a dozen timers to keep us on track. Each week maybe we will drop a medication and eventually we will have a bit more freedom.

Matthew had been planning a giant family slumber/movie party to celebrate Alice's return. To say the least it was a very sleepless night for everyone. Between three medication pumps running, Evie wanting to teeth all night, and everyone thinking they had to use the bathroom every hour, just didn't amount to much rest. We will always remember it though, and be reminded not to have another giant sleepover until everyone is at least 10 years old! And best of all Alice woke as usually at 4:00 am requesting the Backyardigans. However, as terrible as that sounds it's not so bad, because she is content to watch it with no volume. It made sleeping more feasible for the rest of us.

Alice has eaten better since she came home, she still crawls everywhere. It seems so strange to see her crawl. It won't be long before she is walking again.

Most of the pictures below are from yesterday.

A well anticipated bowl of cereal

A welcome home hug from Matthew

Happy to be home

Just a portion of our pharmacy chaos

What? Watching another movie!


Today, really could not have gotten any better as we woke up to lots of snow and the anticipation of Alice coming home. All of the nurses and doctors gathered as they did with Natalie to send her off by singing and ringing the "going home bell." She is still a bit weak and needed help walking, but she got the job done. Oh, how we are enjoying being home, all together at last. She laughed; and with help from her brothers and sisters finally satisfied her longing to play on her slide.


Thursday, March 1, 2012

An Alice Inspired Post

Alice had a great day today. She is preparing to come home tomorrow (Friday). We are so excited. I keep trying to imagine seeing all my children together in one place. I love it. It's going to be great. Tyler and I agreed that it feels like she has been away forever. I know some kids stay much longer, but this has seemed plenty long. We have spent the day preparing things at home. Tyler already brought a load of things home and I sorted through it all. Looking at all the toys and such that have been in her hospital room, made me super anxious for tomorrow, it also made me incredibly thankful that she is still with us.

So Alice has created a bit of thinking on my part, after speaking on the phone with a sweet little friend of ours...Grace, I decided to share some insight I gathered from her tender little conversation with her friend.

Grace is actually Natalie's age and her dear friend; they have a lot in common. They even have the same doctor here at Primary Children's Hospital. Grace understands what Natalie and Alice are feeling. Grace wanted to talk to Alice so she called and I thought it would be a good idea to put it on speaker phone so Alice wouldn't have to hold the phone. I am so glad I did because I was able to hear their sweet conversation.

Grace asked Alice if she was feeling any pain, and Alice responded by telling her, "no I not, my PICC line is".
Grace then asked Alice if she was in the hospital, and Alice responded by telling her, "no I not, I'n in my room".

I thought about her answer and was touched by her perception of her situation. I then thought about the attitude that follows this perception. No Alice is not in pain, just her central line, and No Alice isn't in the hospital, she is in a nice cozy room.

With anything we encounter in life we have a privilege of choice as to how to react. That choice is what determines our outcome. Alice chooses to be happy because she does not see her situation as a threat against her optimism. Something that comes so natural for all children. To find joy when it seems as though there is none, is a true test of our attitude.

I love what Henry Ward Beecher once said, "It is trial that proves one thing week and another strong. A cobweb is as good as the mightiest cable when there is no strain upon it."

I truly believe that in all things there is beauty, and through all things there is hope. Sometimes we forget that we have choices, and I will admit that there have been times that I thought I had to play the part that would accompany the burdens we have been carrying. Wearing a frown and having a pity party has never helped my hardships go away, it only makes them harder. People or shall I say Children of Divinity CAN DO HARD THINGS. We were created to overcome and are equipped with the proper tools to combat our individual challenges. Might I add...often times not until after a strenuous amount of hard work, even years of hard work.

Ralph Waldo Emerson said, "That which we persist in doing becomes easier for us to do; not that the nature of the thing itself is changed, but our power to do is increased".

He also said, "When it's dark enough you can see the stars." There is always good among hard.

I’m so sorry for this lengthy post-- I just loved her answer…so simple and profound.

Again thank you to so many who have extended themselves to us. The compassion from others makes finding joy effortless.