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.

Saturday, April 28, 2012

Still at the Hospital

Natalie's nasal swab indicated that the adenovirus is gone but now she is posivitive for rhinoviurs.  Both very common virses.  

Natalie is just hanging out in her hospital room, waiting to come home.  She is still scheduled to receive a central line (most likely a PICC) on Monday.  Today Tyler was with her and then Amberly came later.  I will go in the afternoon tomorrow and stay to bring her home Monday (hopefully).  Being that it was Saturday and Natalie is well, and has not had any labs pending, the doctors didn't need to stop by.  It has been nice not having pumps beeping day and night and all kinds of meds around the clock.  It's been a low key stay...which means her condition is good.  Our transplant stay with the girls was hectic day and night for weeks on end.  This seems so strange to us...even at home.  This past week has felt lonely at home without Natalie.  It makes us wonder how in the world we did this for's only been a week this time.

The boys had fun today working on many projects...Alice and Evie were glad to have Mom back.

Thanks everyone for your support!


Friday, April 27, 2012

A Better Day

Today was a great day for Natalie.  She was feeling good today and fussed very little regarding the IV.  She ate and drank more.  The doctors held off on all labs until she has the PICC line placed Monday, they understand the trauma it is to draw blood from her.  Her IV is for medication use only and we hope it lasts until Monday.  Overall she was more content to still be at the hospital than I thought she would be.

Tyler brought the children up for a visit as we traded places.  They had a good time, and then once everyone started to get hungry and tired we knew it was time to take them home.  Tyler stayed with Natalie.  I'm looking forward to spending time with Matthew, Blair, Alice and Evie.

Matthew was so anxious for me to get home so I could see the awesome package that arrived.  We had so much fun playing games and doing puzzles, building rubber band propelled planes, and still much more to come.  The boys talked about this package the entire ride home.  Natalie will enjoy it too when see comes home.  Matthew actually brought some of the items to the hospital for her.  Wonderful it was!! Thank you, thank you, thank you!

I thought it would be good for Natalie to start ordering her own food to acquire some phone skills.  I will say that she has improved much.   Talking to someone on the phone was alright...we practiced our Please and Thank you's and May I's.  The more difficult part was to remember what it was she needed to order.  She would get a little nervous and forget.

I caught some of the conversations on video.  One in which she was holding back a cough or something.  I'm not sure what happened with the other conversation...I'm certain she didn't either. :)


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Thursday, April 26, 2012

Surgery For Natalie--Day 100 for Alice

Today has been a very long day for us.  I was informed this morning that Natalie was able to go home today and things were looking good.  Normally I would have been very happy to hear the news of going home, however, I felt very uneasy about leaving, I have been concerned about her central line possibly being infected.  The doctors told me it was my call regarding going home today or in the morning.  I called Tyler and told him I was a little apprehensive for Natalie to go home, and he expressed equal feelings.   I wasn't sure how I would break the news to Natalie that we would be staying I decided to hold off for a couple hours to see how the days events would play out.  

Shortly after Tyler and I decided to stay another night, the nurse practitioner Brenda came in and said...never mind, Natalie will not be going home, her cultures grew out positive again and things were not looking good.  Brenda said she and the doctor feel like the central line needed to be removed asap.  She told me not to let Natalie eat anything, in the event she will go to surgery. Brenda called down to the operating room/surgery to see if Natalie could be added to the schedule for today.  No luck, the schedule was full.  Brenda said it would have to wait until morning.  The OR was not able to arrange for Natalie's line removal today.  Brenda gave me the green light to let Natalie eat now that she will not be going to surgery.  I was not content with this news and told Brenda that I was not going to feed Natalie anything in the event that somehow the OR schedule may change.  I was worried, because a line infection can turn critical in a hurry--even though Natalie was stable...I didn't want to take any chances.

Once everyone left, I thought to myself...Okay, now what do I do--I have a situation on my hands that I really can't control nor am I comfortable with--I am worried about my child, I need some help.  I decided to pray and be very specific.  I basically said that if this line needs to be out today then Heavenly Father please make a way for this to happen.

About two hours later a surgeon walks into Natalie's room asking me what the need is.  I told him we need to remove her line.  He asked me if she just no longer needed it.  I said well she does but we suspect that it is infected.  He looked at me and said, "Okay, it will come out today!"  He then said, we can only operate if she hasn't eaten anything in the past several hours.  I was so relieved to tell him that she hadn't eaten anything.

Who knows what might have happened, but I'm thankful that we don't have to find out.  With the line removed, we hope she will improve faster.  Natalie was not happy about the IV that has temporarily replaced her main line, but she seems to have made a decision to be okay with it.  We hope by Monday she will be able to have a PICC line placed in her arm so we can finish her IV antibiotics at home.

The surgeon emailed me a picture of her central line after he removed it.  I had requested that he send a sample of the catheter to the lab for testing.

Throughout the day I was on the phone with pharmacy coordinating Alice's medical supply delivery, and arranged to have a nurse come to the house to help Tyler change Alice's dressing.  I also tired to arrange for Natalie to have her ears cleaned out during her operation.  I didn't think of it soon enough or it may have worked.  Her hearing test isn't accurate because of all the fluid behind her ear. 

Needless to say I'm a bit tired and finally took my shower at 10:00 pm--so much for getting ready for the day.  I don't have my calander with me to double check, but I think today is 100 days for Alice.  I will make her a tribute post and back date it for today.

Today we watched "Enchanted" our favorite movie that we always watch when we are in the hospital.  We painted more rocks, put some scripture stickers in Natalie's new set of scriptures she received at her baptism.  We colored.  I told her funny stories about things she did when she was a toddler. Natalie even had a little school session today from the hospital educators group.

Natalie and I also watched a video she took of Evie with her iPad days ago. It made us miss her. Natalie said, "I just want to kiss her fat cheeks."  

Tyler has been doing a fine job taking care of everyone at's only been a few days and I miss him already. 


*Coming soon...nurse tribute, doctor tribute, pink bucket tribute and the untold stories.

Natalie coming back from surgery to her room in ICS, upon awaking she complained that her chest hurt where her line was.


Wednesday, April 25, 2012

Set back for Natalie

We had intended for Natalie to come home today, however, we will be in the hospital for another couple days. She now has positive cultures for Staph Aureus and Enterococcus. It's becoming more serious, but manageable as we are fortunate to be here where the bacteria can be treated immediately. Gentimiacin is a new additional antibiotic she will be taking to help clear the added bacteria. She was not happy when she learned she needed to stay longer. That news happened to be delivered nearly the same time she had to have a nasal swab done. It was an unpleasant moment for her and all others. Tyler called me and suggested that I bring all kinds of crafts and activities when I come to cheer her up, then he also asked that I bring the boys. I thought that was a great idea, so we all came and Natalie was a happy camper. The boys stayed for almost 4 hours then went home with Aunt Amberly. We played games, watched funny movies, painted rocks, and even hid toys in the room and took turns finding them. It's surprising how many great hiding places are in these little rooms. When the boys needed to leave they were sad, they wanted to stay longer. However, it was getting late and they were getting hungry. When Natalie was ordering her dinner Matthew and Blair rambled off their requests...Matthew wanted two cupcakes and Blair wanted a salad with gravy on it. Amberly picked up some happy meals for them on the way home. They thought that was great.

Tomorrow we will find out more about the cultures, and her condition.  We are hoping for good news.
Natalie was giving them a tour of Disneyland on her iPad.  She discovered this darling new Disneyland app.
Painted rocks, Natalie painted an alien rock, Matthew painted a race car rock, and Blair's is a rocket/race car rock with big fire engines.
I asked Natalie if she knew Aunt Amberly's middle name and she said, "Yes, it's Putties"  They are great pals.
This IV pole seems so simple...just two pumps (much easier to maneuver around the room)...I forgot to rotate the picture.
Matthew and Blair were loving the adjustable bed, TV, and the attention.  They thought they were in a hotel room.
Blair taking a ride on the IV pole
Matthew is pretending to be the sick patient.
They were having fun together until I said it was time for the boys to go, they put frowns on to let me know they didn't agree, they didn't even want to smile for the camera.

Tuesday, April 24, 2012

Feeling Better

Natalie is feeling much better already. We are so glad she is here, had we not come in it could have been very bad. The bacteria she developed is something that most people just have on their skin and isn't washed off in the shower or bath. The doctors suggested that the bacteria just found it's way into her body, possibly from her central line. They also said it is more amazing that she has not had this sooner, than it is that she has it at all. This hospital stay feels like a walk in the park, no biggie. A couple days is just a little wrinkle in our way. We learned today that Alice's chimerism test came back and now shows 95% donor cells. She is getting closer to the goal of 100% donor. Both Natalie and Alice's neutrophil antibodies no longer appear in their blood. This is also great news. Another test will be taken regarding Natalie's Tcell's. The past test showed more host Tcells than they anticipated, however, they feel it wasn't accurate. More results next week. Tomorrow is day 99 for Alice. Some how the past four weeks have passed in a hurry. Much still ahead, but so much already accomplished and behind us. Natalie and I had some fun together today. We talked about her past stay during transplant, reminised on some fun memories, we would stay up super late watching cool videos on Youtube and read story books. Sometimes it would be 2:00 a.m. and we had more to do. It was a little tricky trying to adjust to an earlier bedtime when she first came home. Tyler will be staying with her tonight. Here is Alice in clinic taking her medicine, watching a movie and playing with a doll house.

Monday, April 23, 2012

Natalie is Admitted and Alice goes to Clinic

Around 5:00 a.m. Natalie came into our room feeling dizzy, thirsty, heavy and achy.  I got her a drink of water and felt her head...she was very warm.  Her temperature was nearly 103 degrees.  She was vomiting some and feeling terrible.  I called the doctor and they began preparing a room for her in ICS.  Tyler brought her, arrived by 6:30.  I stayed home to tidy things and get Alice ready for a long day in clinic. 

Natalie's fever came down with Tylenol some hours after being in the hospital and she began an antibiotic called meropenem...later the doctors started her on vancomycin, another antibiotic.   Natalie also received IVIG shortly after arriving.  The blood cultures they sent off came back positive for gram positive cocci...which is a bacteria in her blood stream (a common bacteria).  In the next day or two we hope to learn even more about the bacteria in her blood stream on a specific basis.  Natalie will need to stay in the hospital at least 48 hours with out fever, and a negative blood culture.  We are assuming she will stay at least until Wednesday.  Not too long!  The good news--Natalie's immune system has responded properly to the bacteria.  She has created many white cells to combat the invasion.  Her ANC is 9,100. 

Alice did well with her IVIG infusion in clinic.  Her counts are better this week, her ANC is 600!  Tyler and I traded places between girls throughout the day...brought back a few memories of the recent past.  Alice showed a bit of envy for Natalie getting to stay.  Alice is so funny! 

Evie's ears are improving slowly and is still quite fussy, we are thinking she has the adenovirus similar to Natalie, which is highly contagious and can cause ear trouble.   We just need time to work it's magic and let this virus pass on through.  It is still bizarre to me that Evie is practically 9 months old and hasn't been sick previously.

Thanks for all of you who keep track of us and pray for's made all the difference!

Natalie welcome sign...always great to feel loved.

She slept most of the day...she must not be feeling well to sleep so much.
Her room looks so uncluttered and clean...Rm.4424

Just arriving in clinic...happy as can be.



Blood Pressure and Oxygen Level

Leaving the hospital but not without watching the train in the rainbow cafe pass by.

There goes the train.


Sunday, April 22, 2012

Saturn's Rings and Evie's Ears

Last night we looked through a telescope and saw Saturn. It was really something to see the rings so clearly. It was relaxing and fun to see the kids get excited about looking into space.
Tonight was dressing changes for both girls. For Natalie it was not as painful this time since we had used a different type of adhesive to secure her line. She even did it herself without a whimper. Alice throughout the afternoon had anticipated her dressing change. She every other five minutes would say, "Dad don't change my dressing!" Anyhow, she did well enough. Always tough to see them go through it each week.

Poor little Evie hasn't been well.  She woke two days ago with her first fever ever (a crazy new thing for us to have a 9 month old baby that has never been sick previously--not complaining)  Lisy took her to see the pediatrician because we suspected that her ears were hurting, once we ruled out that it must be more than just teething.  Sure enough a double ear infection.  She was given some antibiotics and hopefully by tomorrow she will have some relief.  Maybe tonight will be more restful than the last. 

Blair again made me laugh yesterday. Now, the information I'm about to divulge is embarrassing to me but too funny to pass up. I remember back in the day Saturday Night Live would do a spiff called "Deep Thoughts by Jack Handy." They became so popular that a book was made of them.....anyway, Blair seems to have similar deep thoughts, and they seem to be just as funny sometimes.  I was able to escape for 30 min to get out, run and breathe a bit before it was time to administer the girl’s meds. I was a fool and ate a hamburger before I left. So, with a mile left to go, the hamburger decided its new home wasn't too pleasant; then told my body it was making an emergency move, and its exodus would be nothing less than spectacular. I made it to the house, rushed in and made it to the bathroom, closed the door and realized I had passed Blair on the way. Just then Blair pressed his mouth against the crack of the door and gave his "Deep Thought:"

 "Dad, when I have to go number two, I just make an angry face until it turns red and then everything goes good. You'll do fine Dad."

 I returned a weak reply and said, "Thanks Blair, you're the man."


Wednesday, April 18, 2012

Meds and Bed

Administering the meds this past week seems to have been harder because the girls are tiring of the morning and night schedule. We are a bit tired tonight, but got a quick clip of the girls going to bed and saying goodnight.

Monday, April 16, 2012

Post Transplant Consultation


weigh in

measure up

vital signs

Hearing test in Audiology

Natalie Day 117 -- Alice Day 90

Today was Natalie's official 100 day consultation post transplant with the doctors. We reviewed a lot of information from last weeks labs and tests, and discussed future expectations. If explained in detail I could be typing for a long time and I'm afraid it would be too bland. In short, she is doing wonderfully as hoped and the Adenovirus is staying at bay. Her lung CT scan came back good. The areas in her lung that had created concern pre-transplant have indeed improved slightly, although appeared faintly a new spot which is of no concern.

Natalie had a follow up hearing test today and she seemed to nearly parallel her pre-transplant testing, with some small changes of more hearing loss. Possibly, and hopefully the additional loss can be attributed to the fluid which is currently in her inner ear due to the virus. We will be meeting with an ENT shortly to discuss intervention such as hearing aids. She has not been able to hear birds chirping for a long time and it breaks my heart to know that she isn't able to hear those lovely sounds. For Easter I got her a bird whistle from the dollar store (the kind you put water in), but it didn't seem to work like the whistles I remember having as a kid...I guess you get what you pay for :).

Natalie's ANC was 3600!! Awesome! She will begin a more rapid taper on her anti rejection medication. Because she had a sibling donor her graft vs. host disease chances are much lower than might Alice's be. We hope for the best as we taper down.

As for Alice she is more of a wild card. Although, she has been doing great. Her numbers were low today. ANC 500. The decision was made to taper her more rapidly from the steroid to allow her body to produce more white cells, under less immune suppression. We will watch her closely as well for graft vs. host disease.

It was a great day in clinic...of course the hardest part was changing Natalie's dressing. We are trying a new kind of tape this week to see if it helps with the agony.

Tyler and I had ordered 2.00 dollar laser pointers for each of the kids so they could play laser tag (the homemade kind)...with rules such as no pointing them in eyes (hmmm???) Well for family night we discovered something even better. We decided to hold our very own laser light show. We turned out all the lights, sat against one wall and pointed our lasers to the other wall and ceiling. We played a variety of fun and wild music turned up really loud and had a blast as we flashed our lasers all around. We made shapes, follow the leader, tried to synchronize it to the music. It was so cool. The kids loved it, and after a while our laser show turned into strobe light dancing. The lasers pointer are also flashlights, the kids couldn't believe how fast they were dancing under strobe lights. Everyone took a turn dancing and showing off their moves. This then turned into shadow shapes, which was fascinating. How true the saying is that necessity is the mother of invention...or as we might alter, boredom is the beginning of adventure. We were having so much fun we almost forgot about the girls meds and infusions.

I plan to make a post of all the fun projects, games, crafts, and activities that we have been doing. We have received some awesome packages from family and friends that have provided some great entertainment and fun.

Saturday, April 14, 2012

Blair's Birthday

Birthday Man in Bubbles

Looking Good

Blair turned 5 yesterday and could hardly wait to make his birthday cake. The boys wanted to help make the cake, especially to decorate it. The night before they rummaged through their toys to find some cool cake toppers. We just decided to let it be their work, and thus it was! I helped as Blair requested that I draw a little man on the cake with frosting. Being that I'm an expert cake decorator his man turned into an alien. He didn't mind, he said, "This man just has one eye." A one eyed man is quite cool to a five year old. We washed all the cake toppers of course before contaminating the cake. It was yummy!!

We played a fun game called pin the tie on Blair. Tyler and Blair tied for first place, so they had a retry and Blair was almost right on again...he thought he won until Tyler placed it dead on. Well, Tyler was peaking through the blind cheating Dad! Blair won a giant beef stick for taking first place.

Blair really wanted this game for his birthday because of Toy Story

Interestingly Tyler and I looked back in his journal to see what we had done for Blair's birthday last year. Not quite the same excitement as this year.

Tyler's entry reads:

"Today was long again. I took the kids to work with me while Lisy was with Natalie at the hospital. Natalie had her PICC line removed this morning. I have a big dead line at work so I had to meet Lisy on the highway to send the rest of the kids home. Blair's birthday was today, I missed it because I have to make up lost time at work, got home around 2 am. Alice is quite ill with the chicken pox, the sores are really starting to come on heavy. She looks terrible and is becoming very restless. I'm tired and worried."

I remember the day being very difficult as well. It's wise to assume that we all have challenging everyone else we just move ahead and make the most of it. Simply doing the best you can in the moment, is enough sometimes.


p.s. Natalie and Alice are still doing fine. Natalie is still as she was a few days ago, thankfully not worse...same little cough, no more fevers.

Friday, April 13, 2012

Virus---catch up post

The nurse practitioner called a couple days ago to inform us that the nasal swab they did on Natalie this past Monday came back positive with Adenovirus. She has a cough and stuffy nose. This virus is one that affects the respiratory track. Thus, why she has had a low grade fever. We are watching her closely and will do our best to keep Alice from being exposed. If Natalie's cough worsens she will need to be admitted. We hope it improves, she is on anti-virals and anti-biotics. This virus can also serve as a moment of truth to the new marrow, in regards to her leukocytes keeping other infections from developing. The truth is the IVIG she received two weeks ago is protecting her mostly from a viral standpoint. The new marrow isn't necessarily producing B cells yet, however, the T cells can prevent any secondary infections.

The season change always blows in bugs, and Adenovirus is common in the spring along with many others, in which we hope to avoid.

We received some great news about Alice, her anti neutrophil antibody was negative. This means that her body as far as they can test no longer has antibodies destroying her white cells...big step for Alice, her chances of needing more chemo just went down with this good news.

We are looking forward to Monday's clinic visit, we will discuss with the doctors Natalie's progress over the past 100 days and we will receive all the results from her testing and CT scan. Also we should hear the results on Alice's chimerism test.

Yesterday Tyler and I had the chance to slip away from the house for a couple hours in the afternoon...everywhere we went I was looking for Avagard to sanitize my hands after touching anything. I couldn't believe that hand sanitizer was not on every door and self. ;) It was strange to be out and about, we felt a bit out of place. I told Tyler that I would have felt more comfortable cruising the halls of the hospital. I'm sure this weirdness will wear off.

This morning Blair woke up early and climbed into our bed. He said, "Mom it's my birthday!" Sure enough it is...Happy Birthday Blair. We will make a cake today. He wants to put some race cars on his cake. I think he should draw some roads on the cake with frosting for the cars to drive on.

I was hoping to just buy an already made cake from the bakery, however, the girls would not be able to eat it. Homemade cake is much better anyway!

Eventually we hope to have a giant Hero party for the kids (at a park somewhere). I've been saving all the large medicine syringes from the girls infusions...they will be great for water fights and relays. Tyler and I really want the children to remember the good things and celebrating with family and friends will be healing for them, after all each of them have accomplished much already in their little lives.


......Hi everyone Tyler here....something funny happened this morning. Blair told me about a new game he, Matthew, and Natalie made up. It's called "Carrot Breath." It can only be played in the morning and never after brushing your teeth. Its essentially tag except the person who has the "carrot breath" chases until close enough to breath in the face of the other person who in turn becomes the one to deliver the gift of halitosis. It was the first time I have ever laughed and dry heaved at the same time. Because of the obvious dangers of breathing on each other in such a way, we had to put the co bosh on this "great idea." However, I told him we could play when the girls are better. I also told him it should be called "Dragon Breath." He agreed to stop, but disagreed with the name. I can live with that.

Monday, April 9, 2012

Clinic (Day 110-Natalie and Day 83-Alice)

Another day in clinic. Things actually went very smooth. We woke an extra hour earlier than normal to ensure that we would be on time and not forget a thing. We did it! We surprised ourselves because last night was a challenge. Natalie was up a good portion of the night with a pain in her shoulder muscle, she complained that it was difficult to breath in because it would hurt her shoulder. She was running slightly warm, not enough to fuss over. Evie became restless as Natalie was in our bed with pain. Eventually by 4 am everyone became tired enough that we fell asleep despite the discomfort.

Natalie's labs were great. Still running slightly warm (not an official fever), we will be watching her closely. Her ANC is 4600. She has some congestion so they did a nasal swab on her, she was so upset about the swab she vomited shortly after. Her dressing change was still hard, but could have been worse. She had a CT scan done on her lungs...she did well holding still. All the uncomfortable things that happened in clinic today were quickly forgotten when the doctor said she could grab a hamburger for lunch. Hooray!!


Natalie in CT scan.

Just waiting for Natalie's scan and admiring all the art on the walls.

Alice's counts were great at 1600. She seems to be feeling much better than last week. Alice noticed something in the garden as we were leaving. The kids just finished watching The Gnome-Mobile over the weekend so we got a picture of them with this little man.

Sunday, April 8, 2012


Happy Easter!

I vividly remember Easter last year because I remember trying to make a nice Easter dinner in the meantime of caring for Alice as she was at the peak of her chicken pox. I was struggling to keep a smile on my face, as I knew my load was heavier than I. I love Easter and the message which it brings, but I was overwhelmed and could hardly focus on the one aspect that could alleviate the very burden which I was carrying, the atonement and resurrection. I was aware that Alice was not improving; Tyler and I wondered if her body would be able to pull through—not knowing she had a malfunctioning immune system, but in our hearts knowing something wasn’t right. We were scared, exhausted, and at our ropes end.

I remember finally one night after weeks of no sleep and being scared for our child’s life, I felt I had nothing left to give. I sat on the couch, it was midnight, and Alice was crying out in misery, with raging fevers. I remember Tyler in complete frustration and tears, as he too was feeling desperate and deserted. I started to cry because I knew not what to do. I remember the thoughts pass through my mind, “I’m done…I can’t do this anymore…I don’t want to pray anymore, I don’t want to be nice anymore…I’m just mad.” Afterward I looked at my almost lifeless child on my lap and realized something…if that was the choice that I was really going to make—to be done, so my child would also. I knew at that very moment what I had to do. I begged Heavenly Father to heal her because I knew he could, so in my heart I agreed to press forward with faith, hope, and a willingness to serve Him as He needed me to do.

That night was the first night in almost three weeks that Alice did not have a fever, and she slept soundly the entire night. The next morning there was no evidence of new pox…she was healing. Discovering later what we know now, it was a miricale that she healed. At the time I didn’t understand all the things that may have come from that moment of complete sorrow, but I did understand and always have that God answers prayers.

I look at what has taken place since Easter last year and can hardly believe it. We are so blessed and continue to thank so many of you for coming to our rescue!


Friday, April 6, 2012

Alice Came Home Today

Wow, what a day! We are home now and Alice is back to smack. She doesn't slow down for anything. She kept me up very late last night so I figured I would try to catch a little nap once we arrived home. I had no business trying to nap as long as she was around. Her words are ingrained in my mind, "No Mom, don't take a with me!"

She however, caught some Z's on the way home. She had been so moody while trying to prepare for discharge and gather our things that I knew she was extremely tired. Matthew called as we were leaving the parking garage, I handed the phone to Alice so they could chat. She didn't last past the greeting. She held onto to the phone long enough until I came to a stop light where I could catch a picture of her.

Alice is feeling better, all the tests taken have been negative. She had something that caused the fever, we may never know what it was...we hope she continues to improve.

She had her dressing changed and I was thankful that I didn't have to do it. The nurses do a fine job changing the dressings.

Alice was giving the cleaning lady a thumbs up after she told her how to clean....BOSSY!!

I continue to think back several months ago when we first approached the idea of transplant, the memories are vivid in my mind and I can describe in detail the feelings that accompanied those memories. I feel thankful that we are now on the other end...healing. What a blessing this journey has been for our family.


Thursday, April 5, 2012

Hospital Time

Alice has not had any fevers today. She had a reaction to an antibiotic they gave her, nothing too serious, it caused her to vomit and feel sick. Once the medication was stopped she felt better. Her tummy still hurts, but improving. Many of the tests they have taken for different bacterias and viruses have come back negative, including c-diff. She needed oxygen last night, which surprised us. The oxygen level was minimal and we think she needed it only because of the fever she had.

This video is when Alice first arrived. She is getting settled in and ready for the stay.

Alice and Mom having fun in the hospital watching movies and playing.

Alice loves to try out new toys when she comes to stay.

Keeping us entertained.

Tomorrow will bring more information, hopefully we will be able to go home shortly.


Back to the Hospital; Parent's Perspective Vs. Child's

Parent's Perspective:

Last night around 9pm as I was administering the girls meds, my arm brushed Alice's head and instantly I felt it warm. I did not feel the need to panic, however my step was quick to find the thermometer. I methodically perceived the next moments of decision making to be based off of what Alice's temperature would be. When the thermometer read 101.7F, I immediately told Lisy who immediately called the doctor, who immediately made the order for her to be taken to the hospital. By this time, the feeling of urgency is surging. I rush to start the car and notice my arms are starting to sweat, Lisy rushes to pack the usual overnight supplies. A quick prayer with the family, out the door with Alice, and into the car on our way to the familiar destination. I arrived at the 4th floor with Alice in arms and bags in hands ready for directions to the prepared room. Vitals and blood is taken for testing. I do a fair job of disguising my anxiousness with light conversation and forced laughs.

Child's Perspective:

Mom: "Alice you have a fever we need to take you to the hospital tonight."

Alice: "Yeaaaaaaah, I go home to my room?"

Alice: "Dad, take me to my room, OK Dad?"

Upon Arrival and looking from the outside of the hospital.

Alice: "There's my room Dad, I want Backyardigans."

Dad: "Alice, are you sick?"

Alice: "YES!"

Dad: Alice, do you feel sick?"

Alice: "NOooooooo!"

Moral of the Story:

I wouldn't sweat if I had Alice's perspective........I'll work on it.

She had a confirmed fever and we are currently waiting for blood test results. Most likely a virus is the cause, and her new system is getting a test drive. We will be here; most likely until tomorrow. The doctors will take no chances therefore will require a couple nights. Will post video and pictures soon.


Monday, April 2, 2012

Another Day in Clinic

The days are going so quickly. It's Monday again, (our clinic day) and thus the routine begins. Here is how it goes. We wake like every morning not sure what day it is for the first five minutes, then I say to's Monday, we can't be late this time. We hop out of bed thinking we have plenty of time to get everything together. I'm getting ready, while Tyler removes the girls night pumps, helps them get dressed, we draw all their medications to take with us, attempt to pack a sterile lunch which does not need refrigeration, change diapers, nurse the baby, find masks that seem to always hide from us, and feeling like we are making good time we are still 20 minutes late. However, we have shone improvement over the weeks. :)

The girls are doing well and the doctors are pleased with their progress. Alice has provided a small concern only in the back of the doctor's mind at this point. She dropped her ANC to 300, therefore, was given another shot in her leg of Neulasta. Because she has proven to drop in counts routinely there is a question formulating regarding her body's old cells still lingering. Next week they will run a chimerism test to verify what percentage of her marrow is donor vs. host. We hope 100% is donor, otherwise more chemo may occur in her near future. We feel confident that the transplant will be successful in the end, it may be tricky getting to that point this first year of recovery.

Alice no longer needs her night dose of steroid, this is great news for all of us. We hope this will help her sleep better at night.

Natalie's ANC is good at 1800 her nightly fluids will be replaced with magnesium fluids again. Still no great news regarding her Wendy's burger. Maybe in a few weeks, but no lettuce and tomatoes on the burger. Wow, what a silly thing to ponder over, but it's a big deal for her.

A dear person whom we have recently met works for Wendy's and just gave Natalie some free meal cards to ensure that she will have all the Wendy's she can handle. Wow, Thanks!!

This video was taken just after we arrived to clinic. Alice had a lot to drink during our 45 minute drive. I had packed an extra pair of pants for Alice. As for Tyler; well, we should have packed an extra pair of pants him too.

Special primo parking...personally I never wanted to qualify for privileged parking but I will say that it has been nice to always have a front row spot available.

Natalie getting her labs thankful we don't have to deal with needles.

Wow, many tubes to be filled...lots of tests. They take many labs at there 100 day mark. Next week we will have a mini consultation with the doctors regarding all the labs. Big milestone. Also next week Natalie will have a CT scan done on her lung to follow-up regarding the concern we had pre-transplant, she will also have another hearing test preformed...we already know the results will not be favorable, she struggles to hear.

That was maybe 40-50 ml of blood altogether.

Alice having her labs drawn...not nearly as many tests as Natalie.

Lisy with the girls, Natalie just had her dressing changed. Never an easy thing.

Tyler with the girls...heading home!