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.