Bryce's 4th Birthday

Bryce celebrated his 4th birthday last week. I can't believe our baby is four years old. Where has the time gone???? He is such a neat kid, I don't know how I lucked out to be his mom! Mike and I gave him a bike, and grandma and grandpa Jackson gave him a watch and a horn to put on his bike. To tell you the truth, I think he liked the horn the most of all. He honked that thing all afternoon. After birthday cake, I took Bryce for a spin around the neighborhood. He was so cute, and so excited to ride his bike, but towards the end, he wanted to push his bike because his bum hurt. I guess it's safe to say that I wore him out. He slept well that night. The only thing that I would like to have changed about the day, is to have been able to let Bryce have some friends come and join us. However, we need to keep Ian safe and so maybe next year Bryce can invite some friends to celebrate. Bryce is such a good sport!

Three Clowns....

On Friday, the 15th, Ian and I were out wandering the halls on Ian's favorite past time, wagon rides. These three sweet older ladies came up to Ian and offered him some stickers. I don't think Ian knew what to think at first. I think he wanted to be a little scared, but when he saw me laughing , he warmed up to them. It's so neat that the hospital lets these neat people come to the hospital to visit all of the sick kids.

On Saturday, Ian got to play with Duncan, a therapy dog. Ian was thrilled, it was so neat to see how excited he was to pet the doggy. Maybe some day when Ian is well and Mike and I are suffering from a momentary lapse in judgement, we'll get the boys a dog....???? Hmmmmm....

Hearing Test......

Ian was supposed to be admitted to the hospital last Wednesday the 13th to begin round three of chemo, however, things were delayed because the doctors wanted a reliable hearing test completed. One of the chemo drugs (cysplatin) that is part of Ian's protocol can cause and most often does cause hearing loss... Since Ian has had two rounds that included this particular chemo drug, they needed to see where Ian's hearing is and weigh the risks to benefits.
Thursday morning, the 14th, I took Ian for a behavioral hearing test....yeah that didn't go over too well... two year olds don't care about the games you want them to play, or what sounds you're making and half the time I think Ian was just ignoring them. Anyhow, we had to go back to the hearing center later that afternoon, for another hearing test in which Ian was sedated and electrodes attached to his forehead and just behind his ears to measure electrical impulses in his brain in respect to sound. Anyway, it took over an hour and a half to sedate Ian. They gave him the first dose of sleepy medicine and he turned into a funny drunk or at least what I would imagine a two year would be like if they were drunk. He was singing songs, telling jokes and just plain out talking funny! Both the respiratory therapist and the audiologist said they had never seen a two year who talked as much as Ian. Forty five minutes into the sedation, Ian was given a second dose of the sleepy medicine with the hope that he would finally go to sleep. No such luck, he kept talking, singing and laughing. Finally I told Ian, "It's nap time, go to sleep." Would you believe it...??? He actually fell asleep. They completed the test and I took Ian back to the hospital to be admitted. The doctor came in and informed us that Ian has mild to moderate hearing loss in his right ear and so far no hearing loss in his left. At any rate he will be receiving another chemo drug during his consolidation portion of his treatment that also affects the hearing and so most likely Ian will need hearing aids once he starts school. In the meantime, he should do just fine with regard to speech and language. The doctors omitted cysplatin from Ian's regimine. I feel like it was just Heavenly Father's way of saying that Ian doesn't need that chemo drug anymore, it's done what it needed to....

Bryce and Ian say and do the funniest things

So, I am convinced that Bryce and Ian are in collusion with eachother. They wake up every day and discuss amongst themselves how to make mom nuts, exhausted, or just die laughing.

Yesterday afternoon, I was trying to get the house straightened up and so I was a little distracted. When I finally came into the living room to sit down and take a short break, I noticed that Ian had pulled baby Spencer up onto his lap, and was grabbing him by the neck, while at the same time lifting his shirt up and saying to Spencer "It's time to eat Spencer." Poor Spencer just looked at me with pleading eyes that seemed to say "Help! Rescue me!". I guess Ian has seen me feed Spencer often enough, that he didn't think anything about trying it himself. What a helpful little boy, if not a little confused.

Later in the evening, we decided to make a Wal-Mart run. Those of you who have been to base and know where Wal Mart is in relation to the base, realize that you really have to want something at Wal Mart to make the drive, especially with gas prices being what they are. Anyhow, we went because we wanted to pick up Bryce's birthday present and also because the BX was closed. Well, we had Bryce and Ian in the red wagon, (it is clean and safe for Ian to be in, I don't trust shopping carts!) and the boys were laughing and playing. Bryce, our sweet little boy, starts saying fairly loud "I love my pen-s, I love my pen-s!" Well, I am not easily embarassed, and yet I didn't want him thinking he could behave this way in public. Not to mention it was inappropriate. In defense of Mike and me, we have always felt it was important to teach our boys the proper names of their body parts and to teach them reverence and respect for how Heavenly Father has created them. With that said, I don't think we expected Bryce to take such an interest in this one part of his body at such a young age. Anyway, the more I tried to reason with him about how we don't talk like that in public, he kept saying the word we didn't want him to be saying. Finally, I just ignored him and that seemed to do the trick. I think I need to teach him to say "I love my ears, I love my ears!".

FHE Around the Jackson Home....Never a Dull Moment!

So, yeah....ummm.....hmmm....FHE. Imagine a bloody nose, a call to the on call doctor at MSTI, an unhappy Ian because I want to put a vice clamp(not really a clamp, just my fingers) on his nose (to help stop the bleeding of course), a concerned mom trying to track down her husband who had a mandatory commanders call at 8pm at night (his cell phone of course is turned off), a wild Bryce and a screaming baby. I guess that should do it. Just enough description to start us off. Forget about starting a normal FHE.
I've been prematurely celebrating how well Ian is doing this cycle of chemo. Of course, he HAS done very well. However, that didn't mean he wasn't going to need a transfusion, .....at 10pm .....in Boise (silly mommy, what were you thinking?). Well, I finally got a hold of Mike, one of his co-workers went and interrupted the mandatory pow wow and told him there was an emergency back at the ranch. I wonder how scared he was AND what must have crossed his mind as he contemplated the possibilities on his slow drive home. I say slow drive home because everything on base is agonizingly slow, when you need to get somewhere fast!
By the time Mike got home, I had already heard back from the on call doctor (Dr. Hansen, who by the way is LDS and was probably trying to enjoy FHE with his own family, when I had to interrupt), we needed to come to St Lukes in Boise to draw some labs on Ian and determine if he needed a platelet transfusion. Of course the base hospital is no help, apparently nobody knows how to deal with accessing a port at this time of night and they don't carry irradiated blood products. Okay.... so on a quick side note, who knew there was a choice between irradiated blood products and blood products that hadn't been through the irradiation process....??? So I'm thinking I want the most possibly clean product if given the choice thank you very much! On the other hand, am I going to be so picky if I am bleeding to death in an emergency room from a serious accident????? Tough call..... So I digress, back to the story of our evening.....
We arrive at the hospital a little after 9:30pm... as Ian and I get closer to the oncology annex, Ian starts becoming more and more agitated. I keep promising him that we aren't staying, we just need to get a little blood to see if he needs a transfusion. Of course my promises fall on deaf ears. Never try to reason with a two year old, you won't win. When we finally get to the room they want us in, I get Ian on the bed and the whole process gets started. The nurse and tech were nice and efficient. Ian's port was accessed without incident and Mike, Bryce and Spencer had made it to the room without issues after parking the family chariot.
We probably waited no more than 2o minutes for the lab results, yep, Ian's platelet levels were pretty LOW and there was a bonus, care to guess anyone??? His red blood cells were LOW too. Why does any of this matter you may ask? Well, it simply means that a quick, perhaps hour long transfusion of platelets, has now turned into an hour plus transfusion of platelets and an additional couple hours plus transfusion of red blood cells. At best we'll be there three hours and worse case scenario we'll be there for five hours plus. So you may be asking why this is a problem. Well, it's after 10:30pm by the time the first transfusion even starts and we have the entire Jackson 5 trying to settle comfortably into a room designed for a patient and perhaps one other small person.
If we hadn't all been so deliriously tired, it could have been very comical! Ian got the bed of course, and Mike and Bryce shared the VERY small bench seat bed. I wish I had taken my camera for a picture of that. Not only is the bed uncomfortable, it's also about 5 inches too short for Mike and woefully too narrow for two people to sleep on. By miracle, Bryce didn't fall of the edge. Spencer and I initially curled up in a ball at the foot of Ian's bed. Once I had fed Spencer into a drunken milk stuppor I put him into his very uncomfortable car seat to sleep and then I curled up next to Ian. Normally, I don't mind sleeping with my kids, however, I have noticed this phenomenon that occurs when either Mike or I sleep with them. It doesn't matter if we have them well over on there side of the bed, they are like heat seeking missiles, that will ultimately find us! I was dying of heat, and little Ian always has to have his hand down my shirt to hold onto my underclothes. This is of course,is the last vestiges of the days when I nursed him.
So now that I have gone into entirely too much detail, did I mention that the nurse had to be in the room for the first parts of the transfusions to make sure Ian didn't have any adverse reactions to the blood products. It's next to impossible to get a decent night sleep in the hospital.

Ian's platelet and red blood cell transfusion went off without a hitch and we got to leave the hospital at 3:30am. Of course we had to stop to get some gas before could start home. By the time we got on the highway, it was 4:00am. No problem, we would be home by 5:00am.... guess again, half way home we hit road construction that has I-84 shut down to one lane of traffic half way to Mt Home and speed down to 45 miles per hour. Yeah..... so we enjoyed a leisurely return home. Mike was not amused, I just laughed. We got home at about 5:30 am and the boys went to bed and Mike and I finally got to bed.
Once we hopefully catch up from the sleep deprivation, maybe we will enjoy a good laugh about the experience. Of course, Ian is worth any amount of sacrifice. It was neat to see him look and feel better after the transfusions. He is such a neat kid. Bryce and Spencer are champs, they are so flexible and just roll with the punches. We have such neat kids. I hope that we as a family can continue to make a great team and just strive to see the humor in silly situations like this.

Brothers Forever.....

This was just a cool picture of the boys together. Everybody was happy at the same time! YAY! I hope we have a lot more days like this one!

Wagon Rides

I thought I should share with all of you, Ian's favorite past time while he is in the hospital. Two words..... Wagon Rides. He lives to sit in the wagon and be out of his room on a wagon ride. I walk the halls for hours, pushing Spencer in an umbrella stroller and pulling Ian from behind. I have also tethered two wagons together, from the handle of one to the rear axle of another so that Bryce and Ian can each have their own wagon. I guess you do what you have to do to keep the kiddos happy. Whoever thought up the whole wagon business was brilliant. It has really helped keep Ian happy. Of course I don't know what I am going to when we go to Primary Childrens. I didn't see one kid on a wagon ride, and besides that, they wouldn't even let Ian out of isolation.

HEROES

I am surrounded by heroes!!!! Ultimately, my greatest heroes are Heavenly Father and Jesus Christ. However, I wish to speak of some earthly heroes.


DR. BRUCE CHERNY
Dr. Bruce Cherny is one such hero. I feel that he treated us with love, dignity and respect. I believe he truly understood how difficult this diagnosis was for us to hear. He also treated our son as if he was one of his own. We are grateful to him for the great job he did on removing our sons tumor. Because of his skill and knowledge, our son can walk, run , talk and eat.




ST LUKES NURSING STAFF
We are so grateful to the nursing staff of St Lukes and Primary Childrens for all of their kind care and love. At St Lukes they have become like family to us. They all take time to talk to Ian and greet him in the halls when I am dragging him around in a wagon. They always seem to have an encouraging word to say and a smile to share.


DR. MATTHEW HANSEN (MSTI Clinic)
We are grateful to Dr. Matthew Hansen at MSTI. He has prayed for our son and we know that he loves our boy. We have confidence in him and know that he prepared the best possible game plan for our sons recovery. We are grateful to him for the hope he gives us!


MT. HOME THIRD WARD
Our ward family. They have loved us, prayed for us, fasted for us and served us in countless ways. They have taught us over and over again what it is to be a true disciple of Christ. They are our family away from family. I am sad that we will be moving to SLC. I am not sure I will ever encounter another ward like this. In fact, I wouldn't be surprised if they were all translated! I hope that Mike and I can be more like them. We love them all so very much!


GRANDPA & GRANDMA JACKSON
We definately could not have survived all of this , without the love and support of grandma and grandpa Jackson. Grandma Jackson is amazing. She keeps up with Bryce and I know she is one pooped pixie at the end of the day. She has provided a calm, reassuring presence when Mike and I have felt scared. She has let me cry on her shoulder. I know she loves our children as we love them. She has overlooked her intense fear of flying and has flown up to Mt Home on two or three different occassions to be here. Grandpa Jackson has also been so supportive! It is wonderful to see the bond he is developing with Bryce and Ian. Ian especially loves having grandpa come to the hospital in the morning and spend a couple hours with him pulling him around in the wagon. Grandpa and Grandma Jackson have even braved taking Bryce to the zoo. On a funny note, grandma has also endured a couple near death experiences involving a wheel chair and Bryce pushing. That's a whole other story though.


FRIENDS & FAMILY
We would also like to recognize our friends and family who are not close. We have felt your prayers and thoughts on our behalf. We are grateful for your letters, emails and phone calls just to check on us and let us know you are thinking of us.


BRYCE & SPENCER
We are also so proud of Bryce. He has been the best big brother. While he doesn't understand completely what is going on, he knows that Ian is sick. I am grateful for his patience with this whole situation. It's definately not the kind of summer he was looking forward to. Fortunately, Spencer is little enough that he won't remember a thing. He has also been a patient baby. What great kids Mike and I have. We are so blessed!

Autologous Transplant

So now that we know Ian has Medulloblastoma, malignant brain cancer, what do we do now??? We met with Ian's primary pediatric oncologist at the Mountain State Tumor Institute and he tells us the plan. Since Ian is too young to undergo radiation therapy for his cancer, it would do significant irreversable damage, the plan is for Ian to undergo an Autologous Transplant. This treatment is relatively new with regard to treating Ian's type of cancer, however in the studies they have done so far it has shown to be pretty successful in treating this type of cancer. Ian's lumbar puncture and bone marrow extraction come back and they show that his cancer has not spread. An additional MRI of Ian's head and spine the day after his tumor resection, showed no signs of tumor growth on his spine and no sign of residual tumor on his brain. All of this news means that Ian is in the best possible position if you are going to have a diagnosis of brain cancer. Nevertheless, the journey to remission and eventually cure will not be easy or without scares.



The plan is for Ian to start induction chemotherapy at St Lukes. He will have three 21 day cycles of low dose chemo and when that is completed he will begin his three cycles of high dose chemo with stem cell transplant at Primary Childrens Hospital in SLC.



Ian is currently in the middle of cycle 2 of his low dose chemo and doing pretty well. The first round of chemo seemed to be a little harder on him. In the middle of his first cycle we had to make a run to Primary Children's Hospital so that Ian's stem cells could be harvested for later transplant. He was admitted a few days earlier than they had planned to, because he was running a fever and also because his labs showed he needed a red blood cell transfusion. It was a little scary to watch him not feel well and not be able to make it better. His stem cell harvest was a great success and they were able to collect all they needed in one round. Ian was so amazing, he was able to lay still for five hours while the harvesting was going on. I suppose it helped that he had a huge catheter in his femoral artery that probably hurt if he moved too much! Ian was released the next day and we headed home to Mt Home.



On a side note, Ian lost all his hair while he was at Primary Childrens. He sure looks good bald. His hair was coming out in clumps and so I asked the nursing staff for some clippers and I shaved his head. What didn't come up with the clippers, we took off with medical tape. Through every new step Ian has been such a trooper. I admire him and love him more than I can adequately express!

Life's Challenges.....

I suppose all of us at some point or another will encounter challenges. Some will be enormous, seemingly insurmountable, and others will hardly make a blip on our radar screen. Some of us will bring challenges upon ourselves through our own disobedience and some just come because life is one big test. Some people will seem to glide through life without a hint of problems, and others will have one challenge after another. I guess it doesn't really matter how big or small the challenge, it really only matters how we respond to the challenge.



On June 2, 2008 we took our son Ian to St Lukes in Boise Idaho to have an MRI done. He had been experiencing some unusual symptoms for about a month and half. It started out with vomitting, lethargy, loss of appetite, sleep disturbances, pain and eventually significant loss of gross and fine motor skills. Ian's MRI showed he had a very large tumor growing at the base of his skull. Prior to the MRI, we had a sinking feeling something was terribly wrong, and yet we held out hope it wouldn't be anything serious. When the doctor informed us of the findings, it seemed like our whole world came crashing in on us. Ian was immediately admitted to the PICU, where they placed an external shunt to drain the excess fluid off his brain. He was scheduled for surgery on June 5th.



It was amazing to watch Ian come back to life after the excess fluid was drained off his brain. They hadn't even removed the tumor yet and he was feeling so much better. Dr. Bruce Cherny was the surgeon who resected Ian's tumor. We are told that he is the best pediatric nuerosurgeon in the US. He was able to resect the entire tumor. It is highly unusual for brain tumors to be resected entirely. On the day of Ian's surgery, our ward, friends and family joined us in a fast for Ian and for the medical staff working on Ian. I have no doubt that the Lord guided Dr. Cherny while he worked on Ian. We were updated every hour as to the progress and we felt such a peace that all would be well.



I don't know what Mike and I would do if we didn't have the gospel in our lives. What comfort and peace we have. A couple days before the surgery, Ian was given a priesthood blessing by our sweet Bishop Coleman. He, his counselors and Mike participated in the blessing. The Lord promised to preserve Ian's life, that he would have no lasting side effects from this tumor and that he would grow into adulthood. I still get chills when I think of those promises!



Ian spent a total of 12 days in the hospital. All of the nurses and doctors were astounded at Ian's recovery. I wasn't surprised, not after the blessing Ian was given. Ian is also a very strong little boy. Apparently, the majority of kids with this diagnosis are in the hospital for at least a month and have significant deficits, including eating, speaking, and walking. Ian was eating within two days of surgery and talking and when they let him he could walk holding onto my hand. Mike and I have been witness to one miracle after another. We know that Heavenly Father knows and loves Ian and that he loves our family. He has a plan for all of us.....

I've Fallen to Peer Pressure...

I can't hold out any longer..... my friends and family have been inviting me to create a blog and I've successfully avoided it. I haven't had any real reason for not doing it, I suppose I am just a little stubborn and I didn't want to jump on the proverbial band wagon. However, as of late, the Jackson family is enduring some pretty intense challenges. We don't have a great deal of time to call everyone individually to update, besides, we aren't sure who really wants updates and who doesn't. So in an effort to save time and keep our friends and family updated we have officially succumbed to peer pressure. Ha ha ha! So here we go......