An Extra Middle of The Night Post

Well it's only 2:00 a.m. and it feels like it should be morning already. I have been rubbing Natalie's feet since I put Evie to bed. She just isn't feeling well. She said, "Mom, when you sit by me and rub my feet it makes me feel like I'm not sick anymore." I have attempted to go to sleep many times, but she will call for me to return to her bedside. It reminds me of when I was younger. Things were always better when my mom was by my side; even if it was just to hold my hair back while throwing up.

Natalie had just slipped back to sleep so I laid down for a minute, but of course felt like I should make this post. After all this is my journal and I don't want to forget any details. Someday this will all be behind us and I hope to always remember the ups and downs in detail. Maybe this way I can never forget to help others that may find difficult times, as I will always have this journal to remind me of this time we have received great help.

I asked her before going to bed if she would like to listen to some music to help calm her. She asked for primary songs. I found a lovely CD someone had given us of primary songs in a lullaby version. I went to turn it off and she said, "Mom, just put it on repeat so I can listen to it all night."

We are surrounded by many tender mercies. Thank you everyone for your prayers. They are truly helping. I know Heavenly Father has even addressed the little details. I have never had a baby sleep so well at night like sweet Evie does.

I better run she is calling for me to rub her feet. :)

Lisy

Day 18-- False Engraftment!

Natalie had a rough night. She had a fever, some vomit and her ANC dipped to 400. Hopefully by tomorrow her numbers can come back up. The doctor said it is normal to dip a little. I was under the impression that with a sibling match it shouldn't dip. Until her ANC stays at 500 for two consecutive days she has not engrafted, which is what we originally thought.

Natalie has struggled today with what we think is withdrawal from the morphine. She was taken off the pump today, but showed withdrawal symptoms so is now back on a low dose and will continue to wean slowly.

Alice will be here bright and early. Oh, I just want to cry thinking about what she is about to begin. I have to take it all one day at a time and remember that when this is all over, we will be thankful we made it through and will have a much better prognosis. Alice is truly in need of transplant, for her little body has been even more aggressive at attacking itself than Natalie's.

For many years I would find ways to boost Natalie's immune system, not realizing that in her unique situation it was adding fuel to the fire. Alice's body is the same but for some reason she seemed to be more sick at a younger age.

Well anyway, now I'm just rambling--I am tired and need to go to sleep. Both Natalie and Evie are sleeping. I better do the same.

I'm glad that tomorrow I will have all three of my girls with me. I won't have to rush back and forth so much. I know Matthew and Blair are well at Grandma Schelleberg's. I will Skype with them each night so they know we are thinking of them. I miss them already.

Thanks everyone for your support. It is amazing how far words of encouragement can truly take someone (for Natalie and her parents). :)

Lisy

.

Day 17-- ENGRAFTMENT!!!

The nurse came in early and tapped me on the shoulder as I was sleeping and handed me Natalie's lab reports. I quickly scanned over each value, searching for of course her ANC value. It was there -- 500! She has officially engrafted--Hooray!

Because Natalie's donor was a sibling her neutrophil count will continue to rise and should not dip from 500. She has engrafted 5 days sooner than the average transplant using a sibling match donor. The winner of our engraftment bet was Tyler/Grandpa Fish.

Today was great. She spent most of the day laughing and enjoying herself. She watched the Smurfs and played games, and sketched blueberry ice cream cones.

Natalie's mouth is well enough to eat, however, due to the many medications food doesn't taste the same and her desire to eat is minuscule. She will most likely come home on TPN (IV nutrition) and other fluids. It will take some time before food begins to taste good again.

Aunt Amberly is spending the night with her tonight. Tyler and I are home with the boys and Alice. Tomorrow we will pack Matthew's and Blair's bags for Pleasant Grove. Early Monday morning Alice will join Natalie.

I have no idea how we will be able to reason with a 2 year old regarding oral meds with mouth sores. Hmmm.

One last thing, I was thinking much today about how many things could have gone wrong up to this point with Natalie and how little actually did go wrong. We know that many prayers have been heard in our behalf. We have seen the ugly side of medical disappointments many times and know how easy it can happen. We feel so blessed to have many faithful people praying for us....it has made all the difference. Thank You!!

Lisy

Day 16 -- Almost There

Natalie received red blood cells today and her ANC is between 200-300. This is big news. She is feeling significantly better. She did her mouth care with ease.
White blood cells are so interesting. It's like magic...the process of healing can happen so rapidly. There are many things the medical field has been able to synthetically reproduce--white blood cells are not one of them. They are so precious and vital. I wish I would have majored in biology and chemistry; I'm so fascinated by it all. Well anyway it has been so exciting watching the healing begin. I get all emotional when I think about how happy I am to see Natalie feeling better.

The Bone Marrow team provides a calendar for patients on their transplant birthday, in which anyone can place their bet as to when the patient will engraft. You make a guess and place a dollar in the envelope. The person who wins gets to present all the money to Natalie. Right now it looks like Grandpa Schellenberg might win, he chose Sunday. I will let you all know who the winner is. The doctor made sure that we knew it wasn't the hospital sponsoring the betting events. :)

Alice and Evie came in today. Alice's tests for Rhino Virus were positive. This will not postpone the process. She will be carefully watched. Rhino virus is the "common cold". She is on track for Monday.

Alice thinks the hospital is a fun and cool place. Each time I ask her about coming to the hospital she does a silly dance. I tried twice to get it on video--it was so funny, but I failed--so I posted the videos anyway. In one video she acts happy to come and the other she isn't sure.

Thanks to all for your love, support, prayers, and encouraging words. Even though we haven't replied or sent thank you's please know that we are aware of everything and feel so blessed by you all.

Lisy

Silent Auction & Dinner

On behalf of Dave Anson:

Silent Auction and Dinner for Tyler Fish's Family !!! Hello to all friends and supporters of the Fish family. We are planning a silent auction and dinner to raise money for the foundation. The event will be held locally the second week of February (exact time and place will be sent out in an event from soon). This could be a HUGE event for the family and help out in incredible ways. I am sending this post to ask for the members of this group to give donations or ask friends, family and places of work for donations. In order for this event to be successful, we will need a variety of donations and need help from many people to make that happen. We are looking for many things for the auction in both goods and services. Some things that have been donated already are, for example, teeth whitening visits at a local dentist, a week in a condo on a country club in palm springs, a collection of scentsy candle products. Boutique items (quilts, crafts, etc.) are also great for silent auctions

As stated above, we are looking for a variety of items for the silent auction. We are also planning on parlaying this silent auction with a live auction for higher priced items. Packages that hopefully we can get and always seem to sell well:

1. Mountain bike or expensive outdoor rec equipment.
2. Travel & vacation packages (cruises for two, stay in a time share etc.)
3. Vespa scooter or some type of ATV.
4. Home theater projection/screen/etc.
5. Outdoor play set.
6. Private dinner in your home for eight people from a local restaurant.
7. Art or sculpture from a local artist.
8. ski equipment with season pass

Please, for this to go well we need participation from in collecting and giving donations. If you have an item or a special skill to donate, please donate. If you know people or a company that might be able to donate a good or service , please ask. Who is on board?

Wes Smith will be tracking donations and heading the donation portion of the auction. Please email or call him if you are on board to help. We need a count of who is willing to give or collect.

wgs.smith@gmail.com

Cell number:(801)673-4982

Let's do what we can to help the family.

Thank you !

Day 15--and feeling a bit better

Natalie's mouth looks better today. Her body has begun to produce a trace of white cells (level at .2), most likely monos which are precursors for ANC (Absolute Neutrophil Count) recovery. Engraftment is official when her ANC is 500 or above for two days in a row. Good news....engraftment is just around the bend.

She received more platelets today and will need red blood cells tomorrow. She had a small fever today, possibly due to a combustion of new cell production.

Thursday is dressing change day for her Broviac line. This is most definitely Natalie's least favorite thing. Unfortunately they had to change it twice today, she had been itching a bit under the tape and her finger got caught and pulled the tape up just enough that hey had to replace it.

She drank from a nutrition shake...she swallowed, that was big. She also ate a fruit snack. The sooner she eats the better. We are so happy!

I have to admit, the other day I was home and called Natalie's room to check on her. No one answered, so I tried Tyler's cell-no answer. I called the nurses desk--no answer. I waited for a while and tried again--no answer. Of course, I begin to get worried and start thinking of all things that could be happening. Finally, I get through and she is happy and talking...she was just busy I guess. What a relief!! I can't imagine what it might be like to live each day without that constant worry.

Tomorrow Alice and Evie will be having some labs done. Alice's will be slick because of her PICC line. Poor Evie, she is so chunky that it makes it difficult to find a vein.

Lisy

Hello Everyone--Day 14

The doctors stepped in this morning for rounds and gave news that was a little concerning. Natalie's Cytomegalovirus (CMV) had increased over the night. Approximately 80% of the population has this virus in their bodies, however because of Natalie's compromised immune system, she will need a more aggressive regimen of anti-fungal medicine. They will be watching her more closely throughout the day. Another platelet transfusion will be needed today as she spit blood throughout the night.

This morning the morphine assisted in opening a small window of opportunity for me to get Natalie to speak a little. It took the strength she had left in her, but wanted to say hello to everyone.

Tyler

Day 13

I read several emails out loud to Natalie today. She loves to listen to someone read to her, especially when the material is directed to her personally. I am so grateful for the remarks of encouragement for her, I know they play a healthy part in her attitude and recovery. Thank you for the emails.

Today was met with Natalie playing checkers and reading books between sessions of throat pain. Her blood levels required another platelet transfusion to reduce the bleeding. I noticed today that although the pain has not receded, it seems as though her threshold for it has increased. When she did her mouthwash, she screamed, but continued without stopping. So proud of her. Tomorrow is day plus 14; a day we have been looking forward to. Between day 14 and 20 are the days Natalie's body will possibly take hold of her new marrow from Blair.

We were notified by the doctors today, Alice will be admitted this coming Monday. Her donor is ready and has been scheduled. Alice had many labs today, a chest x-ray and nasal swabs. We are hoping Alice will get a room next door to Natalie. There will be one more day of blood draws, and come Monday she will embark on a journey her older sister knows all too well.

Tyler

Day 12

Natalie had a better day today than normal. We have been staying on top of her morphine. She received more platelets. She played checkers (beat her dad three times), watched a new movie called Ramona and Beezus, which seems to be a bit more age appropriate than Harry Potter and the Deathly Hallows that she had seen earlier in the day. ;)

I came up in the afternoon so Tyler could go home for a night. When Natalie woke from her nap she sat up ever so quickly and gave me a giant hug. That made my day! I was equally as glad to see her. I feel much less anxiety and worry when I am with her, than when I am home. However, it doesn't matter where I am...I always feel I should be somewhere else. I think about the kids at home when I'm with Natalie and when I'm home I think constantly of Natalie. What a dilemma!

Natalie and I really had a fun evening. We read some fun books. Planned out our week of countdown to engraftment. We plan to have something to look forward to each day so the time will pass a bit faster. This evening we played a joke on one of the nurses. She wanted me to place a whoopee cushion on the chair where the nurse will sit and video the nurses reaction. Anything for a smile...right? Hmm..that might be a fun video post sometime. I'll admit I struggle with technology. I never have the cables, cards, chargers, and such that I need to make anything of it...thus the shortage of pictures or no pictures when I post.

Natalie told me that I am not a very good checkers player and that she would teach me how to play. I think that is a fabulous idea Natalie. The truth is--I really am trying.

Alice has developed a cold and cough over the past two days. Tyler will bring her in tomorrow to be examined. Hopefully nothing will come of it.

The nurse switched the chair in our room for a bigger and softer chair. I'm looking forward to a good nights rest.

Thanks to all,

Lisy

New Cut in a New Year

I walked into the hospital room this morning to see Natalie sitting up in her bed, hunched over and coughing up blood. The nurse said her sores had opened up from the violent coughs, and because her platelet counts were so low, her blood was not clotting fast enough. Although we were assured this was a normal activity for bone marrow patients, it was heartbreaking to witness. Each cough is agonizing to watch as she fights through the sharpness that holds her throat and mouth hostage.

Her hair came out by the handful this morning, so we decided it was time to cut it. She wasn't too keen on the idea, but warmed up to it mildly after I told her that I would go first. I had never shaved my head before, so this was a first and possibly not the last. I must say, I'm excited about waking up tomorrow morning not needing to worry about bedhead. Plus, I look like the rest of my brother-in-laws and nephews who are already reaping the benefits of being bald. Natalie was pleased enough when her own hair was finally gone. She says it feels better, although her scalp is tender to the touch. She looks beautiful.

The doctors are pleased with her progress, but caution us that she still has a long road to recovery. We are very proud of her, and although there are more frowns than smiles lately, she is showing her grit as she muscles through each jolt of pain.

Again, Lisy and I are so grateful for the love and help from all of you. One of our greatest desires of late is; having the ability to adequately express our love and appreciation for the burden taken off of our shoulders by all of you. We love you, and thank you from the warmest places of our hearts.

Tyler

News Article in The Daily Herald

http://www.heraldextra.com/news/local/north/highland/highland-family-hopeful-treatments-will-save-daughters/article_72b3d7b8-77cb-501a-9554-dfb6b8092be7.html