Monday, March 22, 2010

The story of PRINCE BEN

This blog entry is a SECRET, if you tell Zoe that I wrote it, I will deny it! Someday soon she will laugh and enjoy this blog entry, but this is not that day---sooooo shhh!! There is a story that has been writing itself for 4 years in our house. Saturday night a big satisfying piece of the story was written. You see when Zoe was just 3 years old I took her and her siblings to the grade school to be babysat by a group of school kids who were raising money to go to Europe in a couple of years. In that group of young teenagers was a boy named Ben Singer, he was 14ish at the time. Ben helped Zoe build a puzzle, got her snacks, watched a princess movie and so on. There were many kids babysitting and their parents were also there to help, and many kids being babysat, but Zoe saw only one other person, BEN. From that day on when she would put on her dress ups she would be getting ready to go to the ball with Ben. When she would talk on her play phones she was talking to Ben. When they played house she was married to Ben. Every stray cat found and lost was named Ben. Then about a month ago at a basketball game Ben asked Zoe to be his escort for the Mr. Senior program. (Think of Mr. Senior as a fun / joke Jr. Miss that the boys do to raise money for the senior class.) In the "Formal Presence and Composure" part of the evening the boys pick little girls to walk around the stage with them and for the AHHHH cute factor. Zoe has been entertaining butterflies in her tummy ever since. A common phrase out of her mouth the past month has been "When I am Ben's escort.....". Thursday night Zoe was sick all night long (really sick, not nerves) and I told her she might have to miss dress rehearsal with Ben. Yeah right, she was going, if she had to have me arrested so be it, she was going. She slept most of Friday and by Friday night was ready to practice. Sierra had been drafted to walk with another boy so I took them both to the dress rehearsal. Ben is contestant number 1 so he and Zoe met in the middle of the stage he grabbed her hand walked her to the front of the stage, knelt down and kissed the back of her hand, and sent her off stage while he went to answer his question. Zoe went off stage and started bawling. I know she was all a flutter from the kiss on the hand! I had to bribe her to go back for their second walk across the stage. To be fair to poor lovesick Zoe, when I got her home and took her temp, it was 102--it could account for some of her behavior, I suppose. The next day she told me eighteen times, at least, which hand Ben had kissed. We went to Moses Lake and Sierra and Zoe got their nails painted. While I was doing hair and getting them ready Zoe explained to Carter that "Ben was the one with the long black eyelashes"!! I should get awards for not laughing out loud these past two days. After the program Ben gave Zoe 2 roses and a stuffed horse, which she named......Ben! She tells us every night that she is always going to sleep with Ben forever, and we keep straight faces and say "I'm glad you like the toy that Ben gave you, it was so nice of him", and walk out of the room to crack up. We are reminded many times a day how Ben was the best dancer, the best physical fitness, the best talent, the best, the best, the best. Here are the photos and video of the girls and their seniors. And remember, when you see him around, It's Prince Ben, or Sir, not just Ben!







Thursday, March 11, 2010

Chemo round 7


Jax and I took ourselves to see the "Lightening Thief" to forget his low ANC count yesterday. Right by the movie theatre is a "Five Guys Burgers and Fries" restaurant so we went in to have dinner there before the show and this is what we saw;

We were giddy when we saw that sign behind the cashier. We told her we were from Royal City and she said "Oh, Thank Heavens, where is it? People have been asking me all day!" Jackson and I decided it was a good sign that Royal City had found us in Seattle! Then it was on to the movie and it was Jax and I alone in a 200 seat theatre--fun! After the movie started 3 more people came in but for a minute that baby was all ours.

I saved the best news for last, his count were high enough. 819 for his ANC up from 630 yesterday (it has to be above 750 for chemo to be administered). We are so grateful to all of you for your prayers (and fasting!). We know that is why we were able to move forward today. No on to our next problem, Jax has to dress up like Apolo Ohno for a school report, speed skating outfit anyone???

Wednesday, March 10, 2010

Some days are just like that....



I guess I should have known this morning when the showers were cold. Our hot water heater wants to go out, (but we won't allow that, but we say NO hot water heater not now)and the little girls got a cold shower, this did not make for happy little girls. Then Carter's socks were scrunchy, he HATES scrunchy socks. Since he is still a little peeved at me for the whole 'tonsils out' thing he refused to wear those scrunchy socks. Then I forgot the chemo schedule paper and the "caring for your child with cancer" book (very boring read I can't recommend it), all realized about 40 miles to late. Next when Jackson and I were driving on the 520 (or 405 or I-90 or some road) doing over 60 mph a HUGE piece of plastic blew out of a truck several cars ahead of us and hooked itself on my side mirror. I didn't want it to blow off of us and hit the next car on the windshield so I rolled my window down and held on to it with all my might. Jax is yelling at me to roll up the window so we would have the plastic "trapped" with us. That boy is quick on his feet. And easy for him to say, all nice and comfy in the passenger seat not fighting a bucking plastic trying to rip my arm off while I drive down the highway! As if we weren't embarrassed enough to be driving the GT (just kiddin' dear I know you don't like us to mock the GT)in Seattle, we now looked even cooler with enough plastic to cover a full size couch flapping around us!!! So I guess we shouldn't have been surprised to get to Children's and learn his ANC count was 600, and he has to be 750 for Chemo. Jackson cried and the tears worked on our sweet Dr. Johnson. She is letting us try again tomorrow, even though she likes to wait a few days usually. So pray for Jax, big numbers tomorrow, BIG!! We are off to console ourselves by seeing the "Lightening Thief". I think it will work!

Monday, March 8, 2010

March 9, 2010--- or the Noftle Family Ten Year Anniversary with Histiocytosis

*Warning LOOONG post ahead, proceed with caution*Jackson used to love clogging class until chemo started and they were on the same day. We would drive to Yakima, get Chemo, drive home get Sammi, and go into Othello for clogging. Usually he would fall asleep or just refuse to clog because it "hurt his port". I think he was just too tuckered out. Chugging with those Prednisone cheeks couldn't have been easy!


Jackson used to be, actually still is, so protective of his port site, I remember this day at the pool he wouldn't go in at first because he was afraid someone would "bump my port". This is him (duh stating the obvious Becky) after I talked him into trying the pool and slide out.


Jackson's eyes would react and get puffy after his chemo treatments. I don't remember who the baby is, write on your pictures people learn from my mistakes. It looks to me that they are on the seminary building grass with Red Rock soccer field in the background.


Steroid cheeks anyone? He is holding his cousin Wesley.


Look at that cute Prednisone belly and face! That was his 5th birthday, 5 months into treatment.


Proof that Jackson and Samantha used to be best buddies. This is in a hotel in the Seattle area. We were there for one of Jacksons many appointments.


Not much has changed, the best thing about trips to Seattle Children's have always been the hotel swimming pools!


Jackson playing in the hospital play room with cousins, Kylie and Sydney and with Sammi. What interesting looking mascot was visiting that day?!


Ten years ago today the Doctors told Michael and I, (Jax was in the room but quite busy playing if I remember right) that they thought Jackson had Langerhans Cell Histiocytosis X. I wanted to write down some things I remember from that day, since this has become my one and only journal! I remember the drive over to Children's Hospital in Seattle, vividly, because they wanted a "fasting" urine and blood sample that day. So from Midnight on, no food or drinks for Jackson. Not fun for any kid, but at this point in the game Jackson was drinking several water bottles a night---about 60 ounces worth. He couldn't go 15 minutes during the day without drinking. Which meant from midnight on he cried, and begged, and pleaded, for water. Both Michael and I were completely undone by this "torture" we felt like we were inflicting on him. I know I cried more than once. When we got to the hospital we went for skeletal x-rays first. That is just an x-ray of his entire body. He did fine, exhausted from the hours of crying and glad to be distracted by something new, I think. From there we took the x-rays (remember the olden days before x-rays were digitally sent through the computers and you had to CARRY them in those huge "Do Not Bend" folders!) up to the Endocrinology appointment that we were "torturing" Jackson for. In the elevator I pulled out the x-rays to look at them and noticed that the one of his head had several gray spots on it, I even asked Michael what he thought about that, but by now Jax was begging for water again and I just put the x-rays away to help Michael deal with our very frustrated four year old son. When we got called back for our appointment Dr. Gunther (yes the one who committed suicide a couple of years ago) was explaining to Michael and I that he wanted to run some labs before we could placate the "crying again" Jackson with some water, during this conversation the student Doctor who was following Dr. Gunther that day, was flipping through Jackson's x-rays, I saw him hold the one of Jackson's skull up to the light and then he interrupted Dr. Gunther and said "I need to see you in the hall Dr. Gunther, now please". When they left Michael had time to say "Well that's never good" and they were back, literally in seconds. Dr. Gunther said; "lets get the urine sample right now and get Jackson some fluids, I think he has Diabetes Insipidous secondary to a rare disease called histiocytosis and his electrolytes are probably getting dangerously out of whack. You get his sample and I will call hematology/oncology they will want to see him today." I asked how he knew and he said that Jackson has multiple HOLES in his skull and since he has been tested several times lately for sugar diabetes and doesn't have it, and since his growth has fallen off it's curve, and the charts, and since he has been on liquid iron for two months and his iron levels continue downward, this was almost 100% what the diagnosis is, in his opinion. He got his urine sample, and Jax got all the drinks he wanted. I can still picture him gulping down the first THREE full cups of water. Poor little guy. The Doctor then told us he would manage Jackson's DI (Diabetes Insipidous) and he then told us our options were a pill to swallow every 12 hours or a nasal spray, seeing Jackson's age we both said spray, and then Dr. Gunther talked us out of it. The spray isn't as effective he felt and could be compromised by colds or allergies and if we could teach Jackson now how to swallow a pill then how much easier the road ahead for him would be. So we consented to the pills which, he had us fill in the Hospital right then and give to Jackson. He also told us to be careful because if a kid takes to many (like a bottleful) it can cause seizures. I must have had 10 dreams about Sammi getting into those pills and having seizures over the next several months! From endocrinology we were sent to Hematology/Oncology. I am ashamed to say I was horrified when we got there. So many bald, ill looking children just freaked me out. I thought it was the most depressing waiting room in the world. Now ten years later I love to see the children in this waiting room, I see such courage, strength and happiness, these are AMAZING CHILDREN. How did I ever think it was horrifying and depressing? But I know that I did. Anyway, I digress, we were taken back to an exam room and the oncologist came in. He told us he felt that Dr. Gunther was correct and all symptoms pointed to Histiocytosis and that he wanted to review our x-rays with his colleagues and they would be with us soon. While we were alone waiting for the "verdict" I remember saying to Michael, "You have to ask them if it's fatal, because I can't." Michael teared up and said he would try. And then one of us said, what's the name of this cancer?? We remember telling each other we will never be able to remember that name! Ha--it's burned in our brains forever more, trust me, but at the time it sounded like a made up bunch of sounds. Four oncologists returned to talk with us, which was an early indication, to us, of how well these Docs. at Children's seem to work together. One of the very first things one of them said was I'm sure you have alot of questions one of them being if this is terminal (nail on the head Doctor man). This can be fatal, he said, but usually only in infants with multi-organ involvement and we feel Jackson absolutely can be treated successfully. They went on to tell us they needed CAT scans, Bone scans and a Bone marrow aspiration to see the extent of his disease. So we called my sister Heather, who was a hotel magnate at the time, got a room 30 miles away for a good deal and spent the night, without a change of clothes, makeup or any toiletries. But Jackson for the first time in months slept through the night because the DDAVP to control his kidney function was already doing it's job. However; Michael and I cried and whispered all night, one of the most memorable nights of our marriage to date (for me anyway). The next day was rough, Jackson had started missing Sammi (they used to be buddies believe it or not!) and was asking for her constantly, and Michael and I were physically and emotionally spent. The bone marrow aspiration was the worst because it left him bruised and sore for a long time. By the time we left that day we knew it was in his skull, pituitary gland, optical bone, ribs and pelvic bones. But we also knew it wasn't in his bone marrow or liver, or lungs---huge blessing. We got home to Sammi and my parents waiting for us, and an answering machine so full of messages that it ran out of room. We had two days at home before we headed back to Seattle, this time with Sammi for Jackson's biopsy (required for confirmation of diagnosis) and port placement. We also had his first Chemo treatment the day after that surgery. The Doctors at children's set us up with a hospital in Yakima to access his port and draw his labs. Then when his labs came back we would go to a pediatrician in Yakima to push the actual Chemo drug. This is one of the things I regret from the that time. The nurses at the hospital in Yakima were horrible with Jackson. They weren't pediatric, They had never accessed a port in a child so young before. They would pin him down and he would panic, scream, and fight. I wish we had just traveled to Seattle where they had pediatric nurses and child life specialists to make it so much more comfortable for kiddos. But I hadn't learn to speak up for Jax and didn't understand my job in asserting myself for my child. I would drop Sammi off at Shelley Boren's house, drive to Vantage, pull over and put emla cream on Jackson, drive to the Hospital in Yakima and as soon as I would pull into the parking lot Jackson would start crying, "please Mommy, I don't want to, please take me home Mommy, NO NO NO". I was pregnant with Sierra and I would carry him into the hospital with him clinging to me so hard it hurt. I hate those memories the most of all the things we've been through on this journey, it was something I should have changed. After the port access and lab draw we would drive to Arby's while we waited for the labs to be processed. Jackson was on Vinblastine, prednisone and 6mp which was an oral chemo drug he would take at home. The prednisone blew his face and tummy up like it does for everyone, they call it a moon face. On him it was soooo cute, in my opinion anyway! The steroid also made him hungry all the time. The problem was the Chemo made things taste "off" for Jackson so his "go to" food was Pringles and Eggo waffles. He practically lived on those. For six months we did this treatment, and then we had another set of scans that said all lesions were smaller and healing, so treatment was stopped. First we had check ups every 3 months, then every 6 months, then yearly, then every other year. With 20/20 hindsight we should have been more involved in the Histio world, but honestly when he was four I never even went to the website, Michael would occasionally but it wasn't the resource it is now. Regardless here we are ten years later and at it again. But this time we can see the improvements, the zofran for nausea, the eye drops for eye irritation, the swish and swallow for the mouth sores and so on. It's very different having a 14 year old with cancer compared to a four year old. There are good and bad about both, but it doesn't really matter because it is what it is, and this is our life. I don't know that I am grateful for Histiocytosis, per say(the per say is for Courtney's benefit!), but I am grateful for MANY things that have come from Jackson having Histio. I am grateful to see my children pray for him, and to see the concern they have when things are difficult for him. I am grateful to see how that touches Jackson and the increase in love in our home when one of us is going through a trial. I am grateful to see how considerate and empathetic Jackson is towards others who are experiencing difficulties. I am grateful for a "reality check" on what really matters and what really doesn't. I am grateful for the kindness of others and the blessing of realizing how amazing my family and friends are. And I am grateful to know that Families can be together forever. I might know these things without Histiocytosis, but would I have known them as well, probably not. So it's the ten year anniversary of our Family having Histiocytosis, how lucky we are to have Jackson, to have each other and to have all of you.

Sunday, March 7, 2010

Happy 40th Anniversary Mom & Dad!

March 7th, 2010 -- 40 years since Mom and Dad said "I do". I do to putting you through college, I do to having five kids on a teachers salary then putting you through more school so you don't have to raise five kids on a teachers salary, I do to moving 12 times that I can count, including one brief stay in a motor home while waiting for a house, with those same five kids! I do to hearts with holes in them and surgeries (plural) on your daughter. I do to 3 kids in college at once, and out of five kids not one marrying somebody from Washington! I do to a grandson with cancer (were hoping just the two times is all!) and a two granddaughters with major surgeries under their belts (Sydney and Aftyn). I do to losing 3 parents and helping the one left behind. I should go on and list 40 things I appreciate about them but, let's face it, I'm tired and it's getting late, so how abouta (as Zoe would say) I name four and you times that times ten!
1. They have always shown love and affection for each other---some of my friends parents never held hands or snuggled on the couch, but growing up we always saw that and it was comforting to know how much they loved each other.
2. They compliment each other, where Dad is loud, Mom is soft, where Mom is shy, Dad is outgoing, where Dad is impulsive, Mom stops to think (perhaps moving the family to Guatemala for medical school isn't a great idea Kent---you know the typical stuff like that!)
3. They share their talents, if someone asks for help on a car or home repair project Dad is there, Mom has played the piano and sewed for countless people over the years, and lots of "Louise come look at this oozing rash or come take so and so's blood pressure" ....
4. They raised us to know that we are loved, we are children of God, and we are blessed to be family. They were right.




*Note to Brenda, the photographer isn't very good, she admits that, but puuhhlleeaassee can't they both look and smile at the same time??*

Friday, March 5, 2010

Sympathy Post & blood counts week 23

They say a picture is worth a thousand words---I think that's true. Just look at my poor little cougar man and tell me you don't feel the utmost sympathy for him. This aready weight challenged kiddo is down to 28 lbs from a hefty 33 lbs last Friday. This week has been tough. He hates the smell in his "froat" and doesn't want to eat. His head is starting to look to big for his body to carry. I've never seen his hip bones so obviously before, it kinda freaks me out, we could make a telethon about starving children with him as the model! I hope we see a new kiddo in one more week.


On a happier note Jackson's blood counts were good again this week!
His WBC was only 2.6 but his ANC was 1100! Everything else was barely low which for Jax isn't really low! Chemo next week so----counts stay good (I'm mean it counts)!