Sunday, January 10, 2010
Sunday, January 3, 2010
Recent Pics...
Here are some recent photos. The snow pictures are right after Christmas, Portland got 4 inches in 4 hours before turning to rain. The kids loved the snow and so did Annabelle.
On New Years, Grace was not feeling good so we had a News Party in our room. Omi, my grandmother ,was visiting and we made the most of staying indoors. She made steak and Lobster(one of Geace's favorites) with fun appetzers and we partied like it was 1999. Tanner had his first New Years with friends and had a great time. The next night, Grace was feeling better and we celebrated again, this time outside with fireworks.
The baby pictures are from today and yesterday and as you can see Ben is eating all that he can. Check out those cheeks. Grace, in between feeling awful from Chemo and resting, decided she wanted to learn to ride a 2 wheeler without training wheels. After falling twice and picking herself up and dusting herself off, here is what happened. Sorry for the shaky photography. Our digital camera broke so this is taken with my camera phone.
On New Years, Grace was not feeling good so we had a News Party in our room. Omi, my grandmother ,was visiting and we made the most of staying indoors. She made steak and Lobster(one of Geace's favorites) with fun appetzers and we partied like it was 1999. Tanner had his first New Years with friends and had a great time. The next night, Grace was feeling better and we celebrated again, this time outside with fireworks.
The baby pictures are from today and yesterday and as you can see Ben is eating all that he can. Check out those cheeks. Grace, in between feeling awful from Chemo and resting, decided she wanted to learn to ride a 2 wheeler without training wheels. After falling twice and picking herself up and dusting herself off, here is what happened. Sorry for the shaky photography. Our digital camera broke so this is taken with my camera phone.
Thursday, December 31, 2009
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
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
Monday, December 28, 2009
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.
Friday, December 18, 2009
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.
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