Spinal Tap

Kim and I usually try to leave out the heavy, burdensome news regarding Grace. We want this blog to be a celebration of Grace's courage and amazing will, as well as other things, but I would not feel right if I did not post my true feelings today.

Today, because Omi is in town, I was able to accompany Grace and Kim to the hospital for Grace's monthly clinic visit. I understand that this is an event that Kim experiences monthly and I am not sure how she has the strength. I go when I can and every time I do, I humbled and deeply saddened by the experience.

The night before , like packing a school lunch, Grace packed a bag full of treats because she knew dinner that night would be her last food or drink until after her spinal tap today. The amazing thing about this mundane act is how matter-of-fact Grace was and how practical she was. She hates spinal taps, she can't stand being poked, I am sure she hates the hospital and she knows how awful she feels after, yet she knows she needs to go and she knows Leukemia is a part of her life. It does not run her, it does not intimidate her, it is something she lives with and slowly beats down, consistently and quietly as only Grace can with a smile on her face.

As I dropped her off with Kim before parking I was almost brought to tears (that is all I will admit) as I watched her little person walk into that gigantic hospital that represents both hope and despair. At one point we carried her into those same doors knowing what we may hear. At another point we excited hanging on to the great news that Grace will most likely will be okay for good. But as Grace exited the car with Kim , she did not hesitate , she did not complain. She knew where she was going, she was holding her packed lunch, her backpack full of things to past the time, and her umbrella and she walked hand in hand with Kim to get poison injected into her spine and poked and prodded. Only to end up being put to sleep in her moms arms and to awake drowsy , spine sore, in a hospital bed with her parents telling her how brave she is.

On a normal clinic visit, Grace sits in the lobby waiting for her name to be called. When it is, she goes straight to the measuring room to be weighed and measured. She then is taken to an exam room where she waits until a nurse comes in, to access her port. This is a large needle that they inject into her chest so that they can test her blood and inject chemo into her bloodstream. When we began doing this procedure, it would take Grace over an hour to gain the courage to allow the nurse to put the needle in her. Today she climbed onto Kim's lap, took off her sweatshirt and showed her port, counted to three with her head buried in Kim's chest and on three the nurse injected the needle. She looked at me beaming as I was so impressed at the speed at which she let the nurse do this. She then told me , "Dad I actually like spinal taps because I get to have the needle taken out when I am asleep. " The only thing worse for Grace than having a needle put into her is having it taken out.

After her port being accessed, we walked with Grace to the surgical room where Grace asked Kim to hold her until she fell asleep. Grace knows that parents are not allowed for the procedure , but they can stay until she is put to sleep. As they injected the medicine in her, she quickly fell asleep in Kim's arms. She laid her on the table and Kim and I stood in the hall as the door closed. We waited listening to Grace's heart on the heart monitor until the procedure was done. When the doors opened, there Grace laid, barely taking up half of the operating table, covered in a warm blanked. We walked in and waited until she woke. When she did, groggy and disoriented , she smiled and asked if she was done and her needle was out. She then slowly got her packed lunch and started to eat. As she was eating I asked her how much her spine hurt after her spinal tap. She said it only hurts for a couple of days and it is no big deal.

All day today she has felt awful and has only left the bed for a moment. We celebrated the new year early from our bed and then Grace fell asleep.

Grace is our hero and a little girl who shows us the example of courage, determination, and delayed gratification. Although she only has 10 more clinic visits and 3 more spinal taps, she daily takes Chemo, steroids, and antibiotics from home. These medicines are constantly increased as her bloodwork relays her health. Once again they are upping her dose and we know it is helping and at the same time she will be feeling the effects for a while.

I apologize for the downer of a blog, but we are so proud of Grace and want to memorialize her courage.

Happy New Year,
JR and Kim

UPDATE

Happy Holidays. We hope you all had a great Christmas and Holidays. We did, and the week before was a great way to lead up to it. The kids and Kim went to the Nutcracker, we had fondue night, we watched tons of holiday movies, drove through neighborhoods looking at decorated houses, and had game nights almost every night. It seemed like every day leading up to Christmas that week the kids made a new gift for Kim or I , wrapped it and put it under the tree. On Christmas eve we set out cookies and milk for Santa and carrots for his reindeer. At around 3:30am Eva woke up from a nightmare and Tanner and Grace woke up ready to see if Santa had come. They were so excited and I was afraid they would never go back to bed. Grace pulled up her eye mask, that she has been wearing to bed every night, and said "Dad, I went like this (cupping her hand behind her ear to amplify sound) and I heard someone say "mmmmm" like they were eating cookies and then I heard clip clop on the roof!" Fortunately they went back to bed and in the morning we found out Santa had come. We later saw that pieces of the carrots were on our garage roof. So that is where the reindeer landed.

Ben is doing great and eating like a champ. He is starting to get a very impressive bosom. He loves baths and also loves his siblings holding him. He calms right down as soon as they hold him. He is getting very strong and seems to be doing great.

Tanner got a trumpet for Christmas and sounds great. He has been such a great helper with the kids. I am sure we rely on him too heavily and yet he is always so willing to help with the girls or Benjamin.

Grace had a great Christmas and is learning how to ride a two-wheeler. We took the pedals off one of our old bikes and she is getting the hang of how a two-wheeler feels.

Eva is the perfect age for Christmas joy. One of her favorite presents from Santa was a purse full of lip gloss and a package of lipgloss watches. Since Christmas she has carried her purse everywhere the only time it is not on her is when she sleeps and as soon as she gets up she asks for it.

Mom is doing great. Mom and Dad are tackling some house projects while we have some extra time at home.

One of the gifts we got for Christmas was the WII Fit plus. Since then we have all been playing it and having so much fun challenging each other. I caught part of it on tape with Grace running. It is a great way for all of us to get some exercise when it is so cold outside.

Sweet Ride and Baby Ben

Sorry we haven't post in a while. Our computer is out of commission.

First of all, many of you know me well enough to be shocked by what I am about to reveal. Yes, it is true, hell did not freeze over, but we purchased a mini-van. Although I had sworn I would never stoop to such an endeavor, I have to admit it is AWESOME! We tried out so many different SUVs to try to find one that could fit us and the dog comfortably so that we could go on road trips and it would be easy for Kim to load two in carseats. Ultimately, we and the kids loved the Honda Odyssey.

Back to more important things. Ben went to the doctor today and in a weeks time he has gained another 13 oz. Which puts him at 8lbs 10 oz. He is doing well and as you can see growing strong. These pictures were taken today after he got back from his appointment. I was taking pictures of him when Tanner, Grace, and Eva came in giggling holding a build-a-bear football helmet. They wanted Ben to try it on and as you can see it fits him beautifully. So if you have a hard time visualizing how big he is think of a teddy bear. Kim is recovering well and looks fantastic. Tanner, Grace, and Eva are so excited for Christmas and Christmas break. They have been doing great at school. Tanner is playing the trumpet and doing a great job. He also is also working very hard on his Shakespeare play. Grace really enjoys Chinese class, Spanish class, and art. Eva has been such a sweet sister to Ben and is always so gentle (for those of you who know Eva, you know gentle is usually not in her vocabulary.) And last, but not least, Annabelle has been very gentle as well. It almost seems that she is scared of Baby Ben. We are happy to keep it that way for now.

We want to wish you all a Merry Christmas, and hope that you year will bring joy and peace. We know since August 13, 2008 we have not been able to visit and see many of you like we would have wanted to. Please know we miss you all and hope to see you soon.

Love,

JR, Kim, and the Ujifusa Clan.

Some recent pics....

chemo

Grace had chemo on Friday and today she is definately feeling it. The purple circles under her eyes told us she would be worn thin today. She did a wonderful job at chemo and actually had a good day on Friday. In the car on the way home she told me, "mom-I usually feel like junk when I leave chemo, but right now I'm feeling pretty good." Hard, yet optimistic words from a little six year old. Grace is remarkable. Sometimes we even forget what she's going through because we have larger windows of normalcy now. Of course, I swallow pretty hard when I watch the Vincristine go through the plastic tube straight into her little body. Sometimes chemo is more bearable than others. I am saying that. Isn't that ridiculous? Our little girl sits there getting unbelievably strong medicine and I sometimes feel like it's unbearable. This time just socked me in the gut. Katie, Grace's nurse told me our doctor would be longer than usual. He was meeting with a "new" family. I heard the mother in the hall. I heard her crying. Her voice haunted me all day. I don't know why it bothered me so much, but I can't stop thinking about them. I didn't even see their faces. I don't even know what her child has. I just know I can't stop thinking about them.

Grace's next round of chemo is on New Year's eve. I can think of softer ways to ring in the New Year...but I know Grace will do it with a smile.

Baby Ben and the family

We had a great Thanksgiving week with a new baby, and family. Ben is doing great and we feel so blessed because although he was very early there have been small and few complications. He is almost over his Jaundice and he has a rigourous eating schedule to make sure he is gaining weight, other than that he is a beautiful, healthy baby boy. Grace , Tanner, Eva, and Belles are adjusting well and are all very sweet and gentle around Ben.

Thank you Shele, Glen, Max, Sam, and Nick for all your help. 4 can be busy and we couldn't have done it without you. You all were so thoughtful and covered every detail to make our week amazing. We all miss you hope to see you soon. And thank you Shele for introducing us to one of our new favorite song, Fireflies.

Thank you Marelis and family for watching our kids so that we could run to the hospital and be there throughout the night and the next day.

BABY BENJAMIN NICHOLAS!!!!!!!!!

Baby Ben was born at 11:49am on November 20th. Exactly a month early, he weighed 6lbs, 7 oz and was 20 inches long. Baby and Mom are doing great and are expected to be coming home sometime Sunday. The kids are so excited to meet him, but unfortunately have not been able to come to the hospital due to new H1N1 inspired rules. They only know him by the videos and pictures brought home from the hospital. We were so disappointed that they have have to wait. Grandma Shele has been a great help and although the kids miss their Mom and brother, they are having a great time spending time with one of their favorite people. More pictures will be coming shortly. Kim did amazing and is recovering beautifully. We are so grateful that our boy is healthy and strong given the difficult and complicated pregnancy.

Grandpa Gill and GG Visit and updates

We have been lucky-is it obvious because each recent post speaks of visitors! GiGi and Grandpa Gill came into town to help out with my many doctors appointments, because we practically live at the doctos office these days. :-) It turns out I have a liver disorder induced by pregnancy, so our little guy will be induced on Dec. 6-in just 21 days! We can hardly believe it's that close. Gigi and Grandpa were able to visit Tanner's school for a really wonderful "writer's workshop." Tanner wrote a story about what he felt when Grace got sick. I, of course, bawled through the whole thing, but I was so impressed with his honesty and his raw emotion he let parade before his sixth grade classmates. He never ceases to amaze me with his bravery. If he allows us too, we'll post his writing, or the video of him orating his story.

Tanner is doing well in school-he just got the part of Lucentio in Taming on the Shrew, had some great basketball tryouts, and has been relishing in free moments to play army. Eva has a new found love of puzzles. She'll now sit and do them over and over (especially her snoopy one-as the picture shows). She also insists on carrying around a purse full of lipstuff and said she really needs a lipstick store. Grace is loving school, when she's well enough to go. Her teacher says she's very in charge and helpful and she loves math and art and is doing really well in Spanish and Chinese! I have been impressed by Grace. What she goes through, I don't think we'll ever fully understand, but she pushes on despite it. For example, Tanner expressed his sadness when he said that at school he often sees her in P.E. and as her class runs clear ahead of her, she still runs the laps she needs to-even if she lags behind. She gets so tired, but what's amazing is that she pushes on. Last night her tummy hurt a lot in the night and she was up early because he body got the shakes. It's like clockwork when she comes off her steroids. She was so sweet and tried to be calm about it, but as JR and I fed her to up her body sugar, we could see her hands just shaking as she held her glass of milk. She's truly good natured about it, though it's hard on her. But, the kids are good examples to us. They really highlight the need for joyfulness and the ability to still love life despite it's struggles.

HALLOWEEN AND THE MAKE A WISH AUCTION

We are a little behind on our posts, but we wanted to include a very special night. Grace got to give back to Make-a-wish by helping raise money. She sold golden tickets during the silent auction, displayed live auction items, and got to go up on stage and pick the winner of the ticket raffle. She was also featured on a slide show that played during dinner. She had such a great time picking out her dress, accessories, and shoes with Grandma and Grandpa and was amazing at the auction. When we got there all the volunteers and coordinators knew her name and greeted her and she was given a wand and a tiara. She worked the room like nobodies business and sold all the tickets available. It was so nice to see her smiling and meeting individuals who helped make her wish possible. What a great night and a better organization.