The Story of the Paper Crane

The following excerpt is from something written up by a group that hung this paper crane chandelier on Saturday. It was INCREDIBLE to watch them do it! When we first came to the RMH everyone was folding cranes for this. I wish I would have done one to say I contributed. But it's still an amazing story! Here are the pictures and then read on:



The 10,000 Paper Crane Chandelier Project was inspired by a true story from Japan. In 1945 when the atomic bomb was dropped in Hiroshima, although thousands were somehow spared then, residual radiation in the aftermath of the bombing caused many to develop what was known then as 'the atom bomb disease'--leukemia.
Sadako Sasaki, only 2 a the time when teh bomb dropped, was 11 when she developed leukemia. She was a runner for her school, until she fainted one day and was sent to the hospital only to discover that she had contractedd the dreaded 'atom bomb disease'. In the hospital, her best friend Chizuko reminded her about the old Japanese folklore that said if a person folded 1,000 paper cranes, their wish would come true.
Bolstered by this legend, Sadako started folding paper cranes from any paper she could find. The nurses would give her paper from the pharmacy to help her in her quest. Sadako folded and folded until she grew so weak that her fingers could not find the strength to fold a paper crane anymore. She died before she could finish 1,000. She folded 600 or so the story goes. Her classmates decided to fulfill her wish by folding therest and burying all 1,000 paper cranes with her. From then on, paper cranes and Sadako statues have been erected in many places around the world, not just in Hiroshima, Japan - but also Seattle, as a symbol of peace, hope and healing.

The practical application of this story came from an artwork I saw at the Mayo Clinic in Rochester, MN. (This is a doctor who spearheaded this project.) When I interviewed for graduate school there, I noticed that everyone who entered the cavernous entrance hall of the Gonda Bldg was immediately struck by the massive installation of 13 glass chandeliers that hung from the ceiling. Each chandelier was made up of hand-blown glass of different colors and shapes stuck together. This artwork was done by the world-renowned glass artist Dale Chihuly.

(Pretty amazing, huh?)
It was hard not to ask the current graduate students the question, "Please tell me exactly what the heck is that up on the ceiling?" I will never forget the answer. According to the graduate student, the artist's intent was such that when a patient entered the Mayo Clinic and looked up at these chandeliers, they would be as completelyl enraptured just like we are. His hope for the patients was that for one awestuck moment, they would cease to think about how much suffering and pain they were going thru, but wonder, just like we did, "what the heck?"
And so, putting the 2 stories together, our idea was to fold 10,000 paper cranes to make a giant paper crane chandelier that will be hung on the ceiling in the Great Room of the Ronald McDonald House, as a gift from the community. We started folding cranes in July. At Stanford, members of the Intervarsity Graduate Christian Fellowship (the group that did all this), the Department of IMmunology, and their friends folded. In Palo Alto and Mountain View, the Helping Hands group at the Palo Alto Buddist Temple and the girls at the Girls Middle School folded. At the House, volunteers, staff members, patients and their families folded. At first the numbers were small. Slowly trickle became an outpouring! The cranes were being contributed to the project as news spread. By the end fo summer we had hit more than 8700 and the project team realized that we had so many cranes we would not be able to fit all the cranes into the chandelier and so we had to ask people to stop. Still, people continuted to fold!
As this was a projectnone of us on the team had ever encountered or attempted before, we were understandably apprehensive on how to assemble the chandelier. After months of planning, we finalized a design and assembly plan. On Nov 8th, gathering all the friends and fmaily we could find, 47 pairs of hands strung close to 8000 cranes on almost 500 strings! Over 10 hours to finish Part 1 of assembling th echandelier. When we finished stringing that day, relief and elation can only just begin to describe how the team felt. We had overcome the biggest challenge we were to face in this project.
And so come this day of Nov 22nd, we hope to complete the assembly of the chandelier by hanging the strings onto a pre-constructed 'waffle' frame. When we get done, just as Chihuly had intended for his glass chandelier at the Mayo Clinic, we hope that the paper crane chandelier not only helps the afflicted children living in the House to take their mind off the condition of their health, but serves as a reminder of all the people out there in the community who continue to love, hope and pray for them.

Isn't that neat?!?! It is a 7 foot ball. Looking up (or down from the 2nd floor) there is a star design inside. Hope you enjoyed the story!

IT'S OFFICIAL!

WE ARE GOING HOME! YEAH!! Words can not express how extremely happy we are right now! Tears still come to my eyes and I have known for over 30 minutes! So a very big thank you goes out to all of you who have prayed, fasted or thought of Daniel for the last 3 months! Thanks to you we have had a pretty smooth ride thru all of this. A few bumps, but nothing major! We have been touched deeply by everyone who has sent their love, or cards or packages to Daniel (and me) thru this. Thank you for everyone (and I know I will never know the incredible amount) of people who have helped my family back in Fallon. Thank you!
So what does this mean for Daniel's future? Well, he is very susceptible to colds, rashes, any illness others have or maybe carrying. The first year is the most critical for the new kidney. But even after that, he will still take a lot longer to heal and more than likely be hospitalized for common illnesses you and I can take care of at home. That would mean coming back here to CA and being admitted here at Lucille Packard Children's Hospital. For that reason, we are going to be asking everyone to be conscientious of his health, please. I don't want to come spend more time here than the normal monthly visits! We will be getting Germ-X for people coming into our home to use. And ask if you have a cold or more to please keep your distance from Daniel at church or other places we might see you. We will, in no way, be offended! On the contrary! We will greatly appreciate your thoughtfulness in the matter! We found out that even if you are anti-biotics, the 'you are not contagious' 24 hour period does not work for Daniel as the doctors have said that other people in the same family could easily be carrying the germ. So THAT will be fun when someone in our household gets sick! We will have to quarantine them to a bedroom or something! Haven't figured that out yet!
Anyhow, thank you! To everyone! We have really felt blessed beyond measure for the little miracles and safety we have been able to witness and have.
I have one more really cool entry about the 10,000 origami paper crane chandelier they hoisted up here on Saturday. I will input that later tonight after Daniel is asleep! As for now, I AM GOING TO PACK!

We are NOT going home.....

YET! (Scared you, didn't I?) We had clincials this morning and apparently the team hasn't met yet. Friday's review of Daniel's biospy was just a review. Tomorrow, Tuesday, at 3 pm the team meets a reviews everything. I think everything will work out the way it is suppose to. I am surprisingly at peace with the fact that I still don't know what we are doing. But I know that Heavenly Father has Daniel's best interest in mind and we will do whatever we need to for Daniel! So tomorrow night I will post again the final verdict.

Our 4 hour walk

Forgot to post Daniel's Halloween picture...Thomas the Train! SURPRISE! SURPRISE! The House had a bunch of costumes donated and he got to pick one.


YEP! Daniel and I went for a walk from 11-3 today. It is a beautiful day, so we decided to take advantage of it! I LOVE Stanford campus. The old architecture is incredible. Well, I've never taken my camera with me, but I did this time! So here are some of the pictures we got today:

This first picture is of The Burghers of Calais It is apparently, one of the most famous sculptures by Auguste Rodin, completed in 1888. It is a monument to an occurrence in 1347 during the Hundred Years' War, when Calais, an important French port on the English Channel, was under siege by the English for over a year.

The story goes that England's Edward III laid siege to Calais and Philip VI of France ordered the city to hold out at all costs. Philip failed to lift the siege and starvation eventually forced the city to get ready to surrender. Edward offered to spare the people of the city if any six of its top leaders would surrender themselves to him, presumably to be executed. Edward demanded that they walk out almost naked and wearing nooses around their necks and be carrying the keys to the city and castle. Saint Pierre, one of the richest volunteered first and 5 others followed. They stripped down to their underwear and Saint Pierre led this envoy of emaciated volunteers to the city gates and it is this moment that Rodin is trying to capture in these figures. Defeat, heroic self-sacrifice and the facing of imminent death. I wish I could put the close up of their faces on here, too. Although the burghers were expected to be executed, their lives were spared by the Queen of England, Philippa of Hainault, who persuaded her husband by saying it would be a bad omen for her unborn child. Anyhow, it's pretty cool!



Then right next to this is the Memorial Chapel that Jane Stanford built in memory of her husband Leland. It is INCREDIBLE! Everything you see is in mosaic. I can not imagine how long that took! We went inside and it is even more breathtaking in there! It's just like a church I'd expect to see in Rome or something. Flying buttresses, gorgeous stain glassed windows, mosaic inside, old all over!


We then walked to the cactus garden on campus. It is a abou the size of half a football field. There are supposedly over 100 different kind of cacti. There are little trails all over in it. Daniel had a lot of fun in there! It was pretty amazing. Here he is 'smelling the flower'!


We then went to the mausoleum that has Leland, his wife Jane and their son, Leland Stanford, Jr. There was a statue of the three of the, too. But the sun was not cooperating to get a good picture of that. Too many shadows.


Next was the Angel of Grief. I felt like I was almost interrupting her. It is so beautiful and peaceful. The Stanford's lost their only child, Leland, Jr. when he was 15 years old to typhoid fever. Some of you may have read the story circulating email periodically of their visit to Harvard's president dressed in rags and were turned away and that is how they decided to start Stanford. It's false! I was reading up on it and read they did talk with Harvard's president and got some advice from him. Anyhow, here is the Angel of Grief:



But Daniel's favorite part of this whole walk.....the safety cone! He dropped enough stuff down it to make a mound underneath it. He had fun for about 15 minutes:


We came back and Daniel opened a package g-ma & g-pa sent to him full of animals. He lined them all up in rows and reorganized them a few times. He now has them in a container we had and is on the bed with the dalmatian dogs watching 101 Dalmatians II. We had a pretty busy day and Daniel is already starting to yawn! Maybe he'll sleep good again tonight. Not a good nap equals a good night's rest!


PS Notice he has no NG tube in! He caught it on his giraffe today and ripped the tape off and out if came! I felt bad for him becuase that tape really hurt! I will feel bad for him later tonight when I have to put another one back in. My first time doing it! Joy O Joy!

Biopsy Results!

Well, there is good news and not so good news. Let's start with good. I have in my possession the results of Daniel's biospy. Here are some quotes from it that you'll understand or I'll explain briefly: "More that 30 glomeruli are seen, of which none are either segmentally or globally sclerosed." That means they aren't hard at all! YEAH! "Multiple foci of ealry tubular atrophy are seen...." First of all early tubular atrophy is expected and seen in all biopsy, Dr. Grimm said. They aren't surpised by that because of the high dose of Prograf he started at. That is why they wean him down to a lower dose over time. "No significant interstitial fibrosis is observed." Which means the tissues are not tough. "Arterioles are unremarkable." The arterioles carry the blood. This has to do with his blood pressure. It is remaining high enough that those little arterioles are receiving the blood pressure they need so they don't die! And here is my favorite line: "There is no evidence of either tubolinterstitial (tissue) or vascular (blood vessels) rejection." SO YEAH!! I am VERY happy for that last sentence especially. So that is all I could decipher from these notes. Bad news: there is still MORE I don't know what it means and don't fee like googling. They review biopsy results every Friday and since Daniel's biopsy was last Friday, tomorrow will be when they discuss the results. That means we don't have a release date yet. Dr. Grimm said everything looked great, but wants to talk to talk to Dr. Alexander first. So Monday we go back for another clinical and we'll hopefully be told to GET OUT OF HERE! I am packing anyhow and planning on meeting my family at Brenda's for Thanksgiving with all our stuff!
Thank you, everyone, who has offered prayers, fasted for or sent good thoughts Daniel's way. They have worked! I, again, heard that his a text book example of everything going right. We haven't had any set backs at all. And our family thanks you for that!
While we were leaving the office there was these 3 people there taking some pictures for a renal transplant brochure they are making. The lady, Jody, saw Daniel walk by (I was still in the room cleaning up his toys) and I heard her say, "Who is this? He is adorable! Where is his mother?" So needless to say, we stayed 45 more minutes because they took a TON of pictures of him by himself, him with Dr. Grimm and him with me. Jody said that she designs the brochure and Daniel will DEFINATLY be in it because he is the cutest kid she has seen up there. I can't argue with that! So when they post the pictures in a couple weeks, I'll put some on here! Funny, huh?

Biopsy Today!

This morning started at 8:00 am at the hospital. He was scheduled for hydration from 8:30-11:30 where they were going to take us up to PACU for the biopsy. WELL....we all know how that never happens! :-) (Hydration, by the way, was IV and because he couldn't have anything by mouth. But they still wanted that kidney to be hydrated well. They used his PICC line.) So finally at 2 pm (after about 1 1/2 hours of major crying from hungary pains!) they took us up to PACU. We were able to go down into the procedure room where they were going to perform the biopsy. It's the same place where they took out his pubic catheter. Anyhow, they gave him some drugs in his PICC line (we LOVE drugs!) and he got really groggy so he wasn't so aggitated. He knew exactly where he was as soon as we walked in the room! They put another one in his PICC line that took a little longer to work, but he shortly zonked out, we gave him kisses and left. 25 minutes later they were done! We were told that it took 30 minutes to 2 hours, but apparently his bowels fell to the side (they roll him on his left side so his kidney is right at the surface) and they got a good view of the kidney (guided by ultrasound) and everything went well! There was very little bleeding....1/2 pencil eraser size....on the bandaid. But the bladder was really full.....1/2 liter....adult size. So they cathed him to drain that so no extra pressure was on the kidney. So we have been fighting scratched up ureter all night! (they took the catheter right out when the urine came out.) Anyhow, Dr. Alexander said everything went textbook perfect! So we are happy about that. In fact, yesterday at clinicals we were also told Daniel is text book perfect but he could gain a little more weight. (I'll tell you about that later!) Anyhow, so he then had to lay flat for 4 hours! GOOD LUCK! he actually did really good....you'll see daddy laying in bed with him for the #2 & 3 hours (first hour was in recovery) and then I held him the 4th hour. So we made it! He got to eat and we got released at 10 pm! So we are finally here. He never had any blood in the urine, so we are grateful for that! We just will fight the painful peeing for 24 hours!
Dr. Usha was in there, and for those of you who don't remember her....she said Daniel didn't have gas....one x-ray later, he had gas! Anyhow, she said something about his reflux. I told him he didn't have reflux anymore (when the urine goes up into the kidney) and she said that she just read the report from the last VCUG and I told her it was wrong then because we were both there and the dye did not go up into his kidney. So she said she'd go print it off. She did, came and read it to us....."OH! He doesn't have reflux! I must have been thinking of someone else!" UGH! She makes us laugh though! Daniel has to have an antibiotic for 3 days due to the catheter. I asked if the antibiotic he is on for UTI's won't help for this case, too? She said, "He's on macrodantin?" DUH! She had his chart right in her arms! Gotta laugh or it would make you angry! Anyhow, enjoy the pictures!

Latest report

Sorry there hasn't been anything to read. Not much health wise has been happening to Daniel! Which is GREAT! I'd rather have that than a bunch of stuff to write about him! We've had a few little bumps on his prograf levels, but I thought about it today and realized I was using the last of the bottle when the levels increased. That is where all the 'stuff' settles even thought I shake it, I believe it still effected his levels because it was more concentrated down there. I've made some adjustments on that! So hopefully we'll be OK from now on.
Daniel and I have been enjoying the beautiful 'winter' here! It's in the 60s which feels like 70s due to the humidity. It actually rained the other day! A LOT of rain. (Nevada doesn't get much and it rarely lasts all day!) Anyhow, we found a walking place called the Stanford Dish. It about killed me off! VERY hilly, but the view was incredible! We could see all over the bay! Here is Daniel giving kisses to his momma! AAAAAAWWWWWWW!


Here is one of Daniel talking to his brothers on the phone. I just thought it was too cute!

Tonight was scrapbooking here at the house! I am happy to say that I am done with the first 6 months of the twin's lives. And 3 months of Nathan. My goal is to have 6 months for each child so that I can give them as Christmas presents. Ryan is the only one that has anything! So I think the others will really enjoy them! I have cut back on my readying, so now I have time for that! I believe I am on my 11th book. So averaging a book a week has been a good pace! I am ready slow down! But I have sure enjoyed it!
So here is the rest of the week. Labs tomorrow morning with a Xenapax infusion (anti-rejection) tomorrow evening. Thursday we have labs in the morning and before dinner Kevin flies in! YEAH! Friday we will be spending the whole day at the hospital because of Daniel's biopsy! So we pray nothing happens then! The biopsy (and I think I have put it before) is where others have started spiralling down hill! Then Saturday we are taking it easy as Daniel needs to as immobile as a 2 year old can be! So there will be some more updates this week! Thanks for reading!

Thursday Reoort

Well, Daniel is doing just great! His Prograf level has been a little high, so we are adjusting meds to figure that one out. We go to labs again tomorrow along with his breathing treatment for pneumonia. (He doesn't have it, it's just the meds to prevent it.) Anyhow, today was clinicals and he had his biospy changed to next Friday. 78 days post transplant. They aren't too concerned that it's not 90 post transplant. They said he's been doing so good all along that they aren't worried. So that will mean 13+ hours in the hospital. It's all outpatient but we show up at 8:30 am for 3 hours of IV hydration and then the procedure will take only about 1 hour. Then we are back to the day hosptial where they watch for blood in the urine, keep him laying down (good luck!) and just make sure everything goes well. So we'll leave about 10-11 pm they said. They said that it's kindof tricky as they roll him to the side and hope all his bowels fall to the bed so the kidney is face up and there is only skin, cavity lining and then the kidney. They use ultrasound to do everything, but there are still the occassional oopsies of hitting a capillary (sp?) or whatever blood vessels run in the kidney. So that is why they watch for blood. Treat with antibiotic and they are good. Then 1 week after that we should get to go home! So I will actually wait and see before we determine what we will do as far as stay here for a few days until the family comes over for Thanksgiving or actually go home.

Tuesday Morning Report

Well, after finally getting to San Jose Sunday night (plane was delayed 2 hours...but I finished one book and started another!) and getting to bed at the wee early hours of Monday morning, Daniel had labs a few hours later. His creatinine came back at 0.6 (0.5 is his base) and his Prograf level was 14 (should have been 7-10....this effects the creatinine level.) So we had to lower his prograf and repeat labs Wednesday morning. I hope it had something to do with the time change and getting meds sooner than normal. So we will see tomorrow!
Daniel's biopsy is scheduled for Monday, Nov 17th. I kept saying it was 3 weeks away when it is actually 2 weeks away! YEAH! That means 3 weeks from now I could be leaving RMH! YEAH! It takes a week to get the report. They look for cell rejection in the kidney and the toxicity level of prograf in his kidney. Ironically enough, the prograf is a toxin to the kidney, so that is why they start his level up high and are weaning him down to a 'safe' range. Anyhow, that is our next big hurdle is to 'pass' that biopsy. I am a little nervous becuase my friend Leah and her son Layton had to postpone their trip home and spend a week in the hosptial because he got a staph infection during the biopsy! So we'll just add that to our prayers and pray Daniel will be fine!