3 Siblings Develop Rare Cancer | KUTV - Utah News - 2News

3 Siblings Develop Rare Cancer | KUTV - Utah News - 2News

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Fun in the Water...

Things are starting to warm up around here .... About a week and half ago we made a trip down to Salt Lake to the Gate Way Mall water feature for kids. Water shoots out of MANY spouts all over the ground. Music is playing and there is seating for parents to watch the kiddos play. We hadn't planned on the taking the kids to the water, however when we saw how much fun the other kids were having and how bad Bryce and Ian wanted to join in we just let them go in fully clothed. Mike and I had a BLAST watching them run from water spout to water spout as they tried to guess which spout water was going to come out of next. Unfortunately, we didn't bring the camera for that. However, we will be going back before the summer is over, it was too much fun not to do again.

So, after that experience the boys have been asking to play in the water out back. We set up a couple pools, a neat kiddy sprinkler and a water table. What fun! The only complaint I have, .... is that our back yard is mostly dirt and patchy lawn! PATHETIC! I have to change out the water frequently and move the sprinkler around so as to not create a mud pit! We even put down grass seed and nothing is growing! SUPER LAME! Nevertheless, this will NOT thwart our summer time fun!

Aunt Tammy

A week and a couple days goes by real fast when you're having fun! We had Mike's older sister Tammy visiting from Phoenix. She left this morning and both Bryce and Ian were upset. Bryce cried all the way back to Layton and to church. Both boys have been asking to go back to the airport in the hopes that they will find their aunt Tammy! We are going to miss her. The good thing is that she will be back for another visit next year! YAY!

We managed to accomplish quite a bit while Tammy was here. We made a trip down to Provo and ate at a chilean restaurant, went to BYU, went to the Quilted Bear, played at Chuck E Cheese's, ate lots of food that tasted great but was not entirely healthy, we played beauty salon in our guest bathroom, Mike and I had lots of date nights, Tammy learned some basic crocheting, facebook in and outs, and got hooked on the Twilight series. Over all I would say it was a very pleasant visit! We sure do miss Tammy!

Saturday Afternoon Road Trip...

My Bryce! Getting so big and growing up so fast! He starts kindergarten in the fall!

Bryce and Ian showing off their new hats. They are so cute, they try to sing the Cougar fight song, or least as much as they know of it! Too cute! Love it!

Mike and his new hat! He's representing!

We are so lucky! We have Mike's sister Tammy here visiting from Phoenix. If you haven't already figured it out, we enjoy visitors!. Tammy got here Friday afternoon and we decided that on Saturday we would go for a drive. We made our way down to Provo and finally found the Chilean restaurant Pantrucas that I had been wanting to try. I also got to talk briefly to Brother and Sister Minound, whom I knew in Chile when I was a missionary. So fun! Well the food was great! I would go back again if I'm ever down that way, but I don't think I will take my boys! They are such picky eaters and they were more interested in trying to pull the table cloths off the table, play with the light switches, pull napkins out of the dispenser and chair hop! It was pretty annoying! Can't take these kids anywhere! LOL! We finally made our way over to BYU. Tammy wanted to pick up some BYU T-shirts for Wilson and as luck would have it for us, there was a HUGE sale on childrens books and we made out like bandits! I love to find good deals on childrens books! We also picked up some BYU hats for the boys! These days a hat is a must have for Ian because his skin is extra sensitive to the sun as a result of the chemo. In addition to the hat, he also gets lathered up with what Mike likes to refer to as "sweater in a bottle" 70 spf sunblock! NOW, my standard rule is that all the kids get hats and sunblock before going out to play! I will not tolerate another cancer diagnosis in my house if I can help it! LOL! Anyhow, things are going pretty well around here. The kids are healthy, we are getting out more and more and we don't have any scans for a couple of months. Life's good! Tomorrow, Ian does have an electrical test on his optic nerves. The ophthalmologist determined that Ian has permanent optic nerve damage as a result of the hydrocephalus. Glasses will not fix the problem. Ian is not blind, however it is possible that he has difficulty seeing when it's dark and then some. We will learn more as time goes on! I pray and hope that the damage is minimal and that it won't impact the quality of life Ian will have!

Also, some more good news, we learned that we will be going to Disney World in August. Ian was approved by the Make a Wish foundation for the trip. We will leave Aug 3 and come home on Aug 9. We get to stay in the Give Kids the World village and access to all the parks. The boys are so excited! How grateful I am for the opportunity! I can't wait for the boys to have this experience! This summer is going to be so much better than last summer! I can feel it!

Loose Change.....

So, Mike has been on TDY in Vegas for a little over a week now. We decided that it would be fun if I could drive down with the boys for the weekend and spend some time together. The drive went well and the boys were great! We stayed with my friends Matt and Kim in their beautiful new home. It was so nice of them to let us crash there. The boys had a great time and it was just nice to be out of our house doing something "normal". Since Ian is 6 months out from transplant this week, his immune system is pretty much back to where it should be minus immunizations! That being said, I am still very cautious about taking him anywhere. I still don't want to knowingly subject him to sickness. At any rate, Matt and Kim's kids were so good about sharing toys and putting up with our loud little monsters.

Most of you who know us fairly well, know that my boys have an aversion to sleeping in. Well it doesn't help that we were an hour ahead of Vegas. So my boys were waking up around 5am Vegas time, 6am Utah time. That is norm for the boys. Anyhow, I was stuck trying to figure out how to keep them entertained in a little area and also keep them quiet. On Saturday morning, our second morning there, Mike had stayed over night and was with me, and so we decided to get them dressed and leave as soon as possible to avoid the struggle to keep things quiet. We went to breakfast at Denny's.

So now the funny story...... as we were waiting for our breakfast, Bryce was playing with some loose change that Mike had given him that morning. Mike was teaching Bryce how much quarters and nickels are worth. So Mike asks Bryce "HOW MANY NICKELS DO YOU HAVE?" and Bryce says pointing to his chest " OOONNEE AND TWWWOOO!" So by now Mike and I are laughing hysterically..... Mike says through his laughing " Bryce NOT NIPPLES......... I SAID NICKELS." and Bryce says laughing " OH!" We have enjoyed the best laugh about this. Bryce is not going to live this one down! Funny Kid!

We are back home and longing for Mike to get home soon! We sure miss him. As the kids get older it gets more and more difficult for them to be separated from their daddy! Bryce cried all last night wanting his daddy. We just keep telling ourselves....8 more years 8 more years! I don't think it will go fast enough for us!

Ian continues in remission

So last week was super busy. It actually all started on Friday the 17th when Ian had an appointment with nuclear medicine at University hospital to have his kidneys scanned. It was an all day event. On Monday the 20th, Ian was sedated to have his brain and spine scanned and then we were back on Tuesday the 21st for an Echocardiogram, a clinic visit and then to the Rapid Treatment Unit for a sedated Lumbar Puncture! To say that I was emotionally drained and exhausted would be an understatement. I don't know any parent who enjoys watching their child endure so many scans and invasive procedures! By Tuesday night I was so done! Poor Ian ended up getting another spinal headache just like I knew he would. Fortunately, I was prepared this time and so I had a presciption from the doc for oxycodone and a case of coke for him. This time around it wasn't as severe as last June. Nevertheless, it hurt to watch him be in pain!

So the good news is that as of today, Ians brain and spine scans show no evidence of disease and the report on his spinal fluid I got back today is that there is no evidence of malignant cells. We are so grateful! However, his scans showed some enhancement/inflammation around the optic nerves and the doctor suspects it is as a result of the chemo therapy he has had. He has an appointment with an ophthalmologist on the 4th of May and I am praying and hoping that the inflammation will resolve itself and leave Ian without any permanent damage. The last thing he needs is to have vision loss with being hard of hearing. One neat thing is that Ian continues to grow taller and gain weight. He is now 40 and a 1/2 inches tall and weighs 38 lbs. He's in the 90% for his height. Most people think he's closer to being four than just having turned three!

I continue to have faith in the blessings Heavenly Father has promised Ian and I know He has a plan for Ian's life. Ian is my hero and such an amazing little boy! He has been through so much and he is so brave and does what needs to be done. He has a great sense of humor and he is so sweet and loving! How did I get so lucky to have him as my little boy? As far as I'm concerned I got lucky with all three of my amazing little men! Bryce and Spencer have been the best through everything as well! Last week, I had to take Bryce and Spencer to get their immunizations updated. We finally got the green light to get some shots they couldn't have while Ian was undergoing his transplants. Anyhow, Bryce was first and from the moment the shots were administered he was hysterical. All the way out of the clinic he was crying and shouting "Stupid needles, don't touch my legs" and so on and so forth. Even in the van he was crying and unhappy! Spencer had four shots and cried when the shots were given and then stopped when I picked him up. He was super brave! As we were leaving Ian kept asking "How about me, I want shots!" He was serious and insistent! I couldn't help but laugh! This kid is seriously asking to be stabbed with needles! He wasn't terribly happy when I explained that he had to wait another six months before he could have shots. LOL!!!!!

I'm glad to have the shot thing done with. Bryce is officially registered for school and I know he is going to do so well! It also looks like Ian might be attending a preschool for the hard of hearing and the deaf! That means I will be all alone with my little Spencer during the day! Nothing is official with Ian, he has an evaluation in May, and so I hope that he qualifies. Apparently it's not enough to be hard of hearing, you have to have some severe cognitive deficits and fortunately Ian isn't showing signs of cognitive delay! That boy is as sharp as a tack! I did run into a woman at Costco who asked me about Ian's hearing aids and said that her little boy attended the Utah school for the deaf and blind and that he was really enjoying it and that he didn't have to have cognitive delays. So if the Davis County School district determines that Ian doesn't qualifiy for their program, I am going to look into this other Utah program.

Again, I am so grateful for the Lord's tender mercies on our little boy and towards our family! I am grateful for priesthood blessings and I am grateful for the sweet peace and comfort that comes from a loving Father in Heaven. While our life is challenging and can be exhausting and stressful, it is worth it all! I have a greater appreciation for my Savior and for the privilege of being a parent. While not easy, I'm grateful for the lessons I'm striving to learn!

Walmart Easter Bunny....

We ran into the Easter Bunny at WalMart yesterday and he talked us into some free pictures.... Mike and I think he looks a little possessed but the boys enjoyed the experience! Can't pass up free!
Anyhow, we hope all of you have a very special Easter holiday as we celebrate our Savior's resurrection. How grateful I am to the Savior for His beautiful and precious gift!

Spencer didn't quite know what to think at first....

Here he is getting more into it... Bryce not quite smiling and yet enjoying himself....