Make-A-Wish Announcement

Amazing things happened for our family this last week. Jackson engrafted on Tuesday morning, his counts stayed up on Wednesday so we got to come home from the hospital on Wednesday afternoon. Thursday night was one of the most exciting nights for Jackson- a big Make-A-Wish announcement was made for him.

Our amazing wish granters Trenna and Kami had planned an evening at the Olympic Oval. We arrived and Jackson was able to go for a ride on the Zamboni- when we played the Wishing Quest game way back this summer, Jackson said that if he could be anything, he'd be a Zamboni driver. Well, his wish granters remembered what he said, and made another wish come true.

They held out a giant banner telling Jackson that his wish was granted when he was driving around the hockey rink. There were so many people there to support Jackson, and it was overwhelming and awesome at the same time.

After Jackson's Zamboni ride, he was given some gifts, and then was able to skate on the ice in all of the official hockey team gear.

By the time the evening was over, Jackson was exhausted, and I was wired up. It was a very stressful evening for me, because I am a planner and I had no idea what the plan was. Apparently there was an itinerary somewhere, but I never saw it. And if you ask Brian, I get pretty demanding when I am stressed out.

Overall, it was an amazing night. I can't wait for the next part of his wish! This was such a morale booster for Jackson. He had just gotten out of the hospital the day before and he loved having a surprise to look forward to.

Santa's Workshop

The nurses call Jackson's room "Santa's Workshop". I love it. And, it gets more festive by the day. I took a few pictures of things around Jackson's hospital room that make me happy, and I wanted to share them with you.

Jackson's tray table has a secret compartment, and Jackson stores his treasures in there. He reorganizes this several times a day. It makes me happy.



Jackson looks forward to opening his chocolate advent calendar every day. His Grandma June gave it to him, and on most days, that one piece of chocolate is all he eats the entire day. He LOVES it, so it makes me happy.

Jackson has a tiny upside down Christmas tree in his room. We have some decorations on it that my mom brought up for Jackson, but my favorite part is that it is decorated with his Beads of Courage.

Jackson has enjoyed crafts, and he loves making these snowflakes to decorate his room.

Some of Jackson's best buddies made him this beautiful string of paper snowflakes to hang in his room. They make the mirror very festive!

And of course, he has a stocking hanging up.

He made this popsicle stick Christmas tree, and made me write "life flight" on it. It figures that my boy would decorate a Christmas tree with some sort of transportation vehicle. That boy has always loved cars, trains, planes, and anything that has an engine.

The popsicle stick reindeer... notice it has two different colored eyes. The perfectionist in me cringes, but the mom in me tells the perfectionist to shut up- that it is perfect, because Jackson made it.

Window clings placed carefully by a sweet six year old.

Snow flake mobile.

3D Paper snowflake- thanks for YouTube for teaching me this one!


Magnetic advent calendar.



Syringe Christmas lights made by Brian. Each syringe had to be drilled out to fit over the lights. This gets lots of comments from the nurses, and is totally appropriate to be hanging in a hospital room.

Christmas wind socks hanging from the HEPA filter.

Of course, the BMT Birthday sign hung by some more snowflakes.


And what could be more festive than a bright red bag of blood? We love blood transfusions!


And best news ever- Jackson engrafted today! Home on Christmas!

Jingle Jingle Jingle

Jackson had a very special visitor on Thursday night. He hasn't stopped talking about it since.

And he keeps singing this song from Rudolph the Red Nose Reindeer. He doesn't get all of the words right, but I love the way he sings it.

Updating....

Being at the hospital this round has been harder for me than for Jackson. At first I was very depressed, especially since they stuck us in the same room, so it really felt like we never even left. It has been hard for me to have my family apart... we are usually a do-everything-together type of family, so being apart is difficult to say the least.

Jackson has been doing really well so far. He has to do special mouth wash 4 times a day, and he hates it, but he complies. He is currently on 4 different antibiotics as a preventative measure. He survived the 3-a-day showers that he had to do for the first 4 days of our hospital stay, and thankfully his skin didn't dry out as badly as it did on the last round, and he doesn't have scabs around his central line site.

Jackson's ANC hit zero on day +4 (today is day +6) so this is when things start to get a little scary. The ANC number refers to Jacksons ability to fight infection... zero means just that; he has zero ability to fight infections right now. Because of his ANC being at zero, we are being extremely cautious about hand sanitizing and keeping germs out of his little room.

Even with his ANC being zero, we are still allowing some very special visitors come and see Jackson. Yesterday Jackson was surprised by two of the Utah Highway Patrol who came for a visit. They brought him a little bear and a squishy cop car. He was so excited to see them.

I also have heard that he will be getting a special visit from Santa this week- Jackson is so excited, but also a little bit nervous.

Jackson and I have stayed busy at the hospital crafting. The nurses call Jackson's room "Santa's Workshop" because we're always making some sort of Christmas decoration to hang on the walls. We've made mittens, candy canes, Christmas trees, ornaments, paper chains, snowflakes, reindeer and even a sleigh. We've been very busy doing lots of Christmas type crafts. Yesterday while we were crafting, I was impressed that this time with Jackson is such a special gift. Not many 6 year olds will sit down and do craft project after craft project with their mom. I feel so blessed to be able to spend this time with him. And believe it or not, this time we've been in the hospital has made me feel the Christmas spirit more than if we had been at home. I think this time at the hospital has forced us to slow down and to prioritize what is really important.

Oh yes, one more thing...

We're right on track, and the doctors think Jackson will be home on Christmas! What a wonderful present!

2nd Bone Marrow Transplant

Well, here we are again. Round two. And honestly I have lots to say, but feel somewhat reluctant to share.

So far, other than extreme nausea, Jackson is feeling pretty good. His morale is starting to waiver, and he isn't the only one. Being in the hospital at Christmas time is difficult, but we are doing our best to stay positive and grateful. After all, we really have been so blessed.







I read an article in the Ensign yesterday and a few of the words were very significant to me, so I am going to share them here.

The Choice to be Grateful
-Henry B. Eyring

"So to be happy and avoid misery, we must have a grateful heart. We have seen in our lives the connection between gratitude and happiness. All of us would like to feel gratitude, yet it is not easy to be consistently grateful in all things in the trials of life...Our sorrows can make it hard to see our blessings and to appreciate the blessings God has in store for us in the future.

We must ask in prayer that God, by the power of the Holy Ghost, will help us see our blessings clearly even in the midst of our trials. He can help us by the power of the spirit to recognize and be grateful for the blessings we take for granted. "

Ball Pump

When Jackson came home from the hospital they sent him home on an antibiotic for his infection. The antibiotic he is on is called Vancomycin and it has to be hooked up to his central line and go through his tubes over a 90 minute time period.

We have a home health care company that provides us all of Jackson's IV medicines, central line care supplies as well as NG tube supplies and formula. When we came home, they sent us these 'ball pumps' to administer Jackson's vancomycin.


I think they are really cool, and I like the way they work- so I thought I would show you all.
Basically the pump is about the size of a tennis ball, and the ball is sort of like a balloon that is filled with the antibiotic. Then the ball is hooked up to a tube and the tube can be attached to Jackson's central line. The tube that is attached to the ball has a clamp on it. The clamp starts and stops the pumping of fluid. What happens is as the balloon deflates, it pushes the antibiotic through the tube and into Jackson. There is a flow regulator that only allows the medicine to go through the tube at a certain rate, which administers the drug over a 90 minute period.
It is all very techy and cool.
I was teasing Jackson that I thought it looked like a Christmas ornament...

Blessings and Gratitude

There is something about this year that makes everyone reflect. We reflect on the blessings in our lives, and we recognize the things in our lives that are good. At first, I was worried that this time of the year would make me feel bitter. After all, I have so much that I could be bitter and angry about. Things this year are so different than years past.

I was worried that this year for Thanksgiving that we would feel alone and singled out. I was worried that we wouldn't be missed at the family dinner. I was worried that it wouldn't feel like Thanksgiving, and I was worried that I would find nothing to be thankful for. All of my worries were for naught. We had an amazing Thanksgiving. We were missed at the family dinner, and a beautiful blog post on my sister's blog was dedicated to our family. We were together at home- our little family- together. I got to cook a feast for 4. We read the newspaper and searched the ads. The kids danced and laughed as they played together. We watched ELF and A Christmas Vacation just like we always do... but this year was different.

Different because it was less chaotic, less busy, and less hurried. Brian got to work on the car. Jackson went outside and rode his bike and Hailey had a nap. I baked, and cooked, and enjoyed making a meal that I was proud of. It was different than any Thanksgiving that we have ever had. But I also was thankful this year for different things than I have ever been thankful for.

There are a few things I want to share here for which I am grateful. I feel more grateful for the gift of life. I have never realized how short and fragile life is. I am grateful for my family, especially my children. I am grateful for the amazing way that Jackson has tolerated his cancer treatments, and I pray that he will be cancer free soon- and that the long term side effects from the chemo and radiation will be minimal. I am thankful for doctors, nurses, techs and medical advances that give us hope.

Other things that I am grateful for are things that I never knew anything about until 2011. Platelets, hematocrit, stem cells, Bone Marrow Transplants, chemo drugs, neutrophils, white blood cells, doctors, nurses, techs, nurse practitioners, immune systems, radiation, rescue medications, antibiotics, feeding tubes, central lines, TPN, child life specialists, hospital buddy dolls, chemotherapy drugs, MRI's, CT Scans, radiation therapy, a warm shower at the hospital, and having a washer and dryer available to use at 2 in the morning when you sick child throws up all over everything.

Cancer makes you thankful- as twisted as that sounds. Cancer makes you more aware of the little things, and it gives you perspective. Perspective on life and what really matters.

Cancer- as horrible as it is, has helped me be more thankful for the things that are important. And as we enter this Christmas Season, our family is more focused on being together, and less worried about gifts, and the commercial aspect of Christmas. We feel more gratitude for the gift of our Savior, for His Atonement, and His loving sacrifice.

We have hope. Hope for a better year in 2012. Hope for a cure. Hope for a cancer-free son. Hope for health and wellness. Hope that we can continue to be grateful, and avoid being bitter and angry. Hope is a strong thing, it is sometimes the only thing that keeps you moving forward. We have hope for a brighter future, but most importantly- WE HAVE HOPE.

NG Tube

Today Jackson got an NG tube placed. We are hoping to use the NG tube to be able to give him formula instead of the TPN he has been on for the last month or so.

Formula feelings are better for Jackson's liver and his gut (as the nutritionist says). Also, with the NG tube we will have to access his central line less, which hopefully will prevent future infections.



The infection that caused Jackson's fever is in his blood stream so he is septic right now. We are waiting for the antibiotics to kill the infection and then we can go home. Hopefully the NG tube will reduce the possibility of future infections. Because of the Bone Marrow Transplant Jackson basically has zero immune system and even though we have been super careful this is just another precaution that we can take.

Another reason we switched to the NG tube is that the formula is about 1/10 the cost of the TPN.

Placing the NG tube was torture for Jackson. He hates it and is very sensitive about it. About the only thing that has made the tube okay is that his Cancer Fighting Friend Annabelle has an NG tube too.

After he calmed down from the tube placement he was ready to play again. He rode bikes all around the ICS floor and even raced his nurse Jared. Only 20 minutes earlier he was mad at Jared for putting the feeding tube in, but he moves on pretty fast.




Overall not our favorite afternoon, but Jackson taught us this afternoon not to hold a grudge. And he reaffirmed my knowledge that he is one strong boy.

Now we wait for the infection to go away and hope the NG tube is worth all the drama.

Funny kid

We finally got settled into our room at the hospital and everything seems to be better. They found out what type of infection Jackson has so now they are treating it and hopefully he can come home on Friday.

Yesterday Jackson and I were hanging out making a paper chain when Jackson and I had this conversation.

Jackson: Mom, I hope when I am a Dad that my kids don't get cancer.

Me: Oh Buddy, I really hope thy don't get cancer either.

Jackson: Wanna know why?

Me: Yeah, why?

Jackson: Because I don't wanna sleep in THAT chair.



Oh man. That boy cracks me up!

Emergency Admit

Jackson woke this morning with a fever of 104.1 and throwing up So we made a speedy trip to the hospital. He has already had two different antibiotics and also two bolus's of fluid to get his blood pressure up.

A fever for Jackson means a stay in the hospital for probably three days.

Platelets still are low (13) so we have to push off his next round of chemo until he recovers from this fever and until his platelets recover in their own.

Once his fever comes down he will get another platelet transfusion today.

This emergency trip to the hospital is stressful. I hope we don't have to do this again.

Chemo and platelets

Jackson is getting a platelet transfusion this morning. Platelets are the last thing to recover after chemo. To be honest, it is kind of nice that his platelets are low because that means he gets to stay home a little longer. However, the longer he stays home the more likely that he will be in the hospital on Christmas.

On another note: We found out today that there is a shortage of Thiotepa (one of Jackson's chemo drugs). The doctors said that they can't find any but that they are working on it. If they can't find the chemo drug our next round will be pushed off until they can find his chemo.

TPN

Jackson has been on TPN before at the hospital. TPN as I mentioned before is basically all of Jacksons' nutrition pumped through tubes into his central line. Because Jackson hasn't been eating, they sent us home on the TPN.

We have never had to do TPN at home, and it is definitley a learning process.

Last night the Home Health Nurse came to our house and taught us how to prime the pumps and get Jackson hooked up to his TPN. The TPN runs continuously for 12 hours from 8PM to 8AM and comes in two seperate bags- one for Lipids, and one for Electrolytes. And because Jackson doesn't have an IV pole here at home, he gets to sport a very stylish backpack that contains the pumps and the bags of fluid.

Lipids are a fatty substance that is white and it is sensitive to lights.

Electrolytes look like water, but then you add the vitamins that come in two tiny little vials, and the clear electrolytes change color to a pale yellow.

Even though the pumps run the fluids into Jackson for 12 hours there is still a little bit of fluid left over in the morning. The nurse suggested that we either throw the left over TPN in the garbage, or we could use it as plant food because of it's high nutritional value. So, this morning I dumped the left overs into my one and only plant- we'll see if it really does help.

I am just glad that even though he isn't eating, he can get some nutrition from another source.

Here are all the supplies:

And the Lipids:

Getting the vitamins ready to add to the electrolytes:

Adding the vitamins:

Shaking the bag to mix it together:

Adding new tubing to the pump:

Priming the TPN pump:

Putting the tubing into the bag:
Making everything fit into the backpack:

Hooking Jackson up- cleaning the caps:

Flushing the lines with saline first:

Now hooking up the TPN tubes:


Pushing the "Start" button: Jackson took this picture, and was so proud of it!


Wearing the backpack. It weighs almost as much as he does.

White Blood Cells Are AMAZING!

Jackson's counts started to come up on Thursday and it seemed like immediately he started to feel better. By Friday he was no longer on any type of pain meds and his ANC was up from 200 to 500 and it was declared that he was officially Engrafted.

Saturday he woke up with an ANC of 800 and once he got out of bed, he didn't sit down all day. I love seeing him feel better. Watching him play is so nice I love that he feels better

Today his ANC is 1200 and we are scheduled to go home in the morning. He is SO ready to go home, and he misses Hailey so bad. However before we can go, he will probably need a platelet transfusion.

Going home Jackson will have to be on TPN (food through his central line) because he still doesn't eat anything. He will have to be "hooked up" from 8PM to 8AM which really isn't that bad because he will be asleep the entire time. He can still eat if he chooses to, but I don't expect he will eat much of anything and with him being on TPN we wont worry too much about him if he chooses not to eat.

Food. That is a new thing we get to worry about at home. Jackson is on a low microbial diet, so there are lots of food restrictions and things we have to do differently. For instance: Jackson can not eat any fast food, fountain beverages, soft serve ice-cream, berries, deli meat from the deli, food that has been out for more than an hour, etc. I have to be very contentious of things when I cook so that I don't spread germs or possible food borne illnesses. The Bone Marrow Team gave me a list about 6 pages long of things that Jackson can and cannot eat, it is very detailed and the restrictions will last until about April.

The food thing is a bit crazy, for example; Jackson must have his own jar of peanut butter and all of his own condiments. If I make him a peanut butter sandwich and if I didn't get enough peanut butter the first time, must get a new knife to add more peanut butter to the sandwich so that the possibility of germs being spread is lessened. If he wants cereal, he must have the entire box to himself and I must package it into individual size servings as soon as it is opened and I must wear gloves.

And although the food thing is crazy, I do not feel overwhelmed by it. I believe it will become second nature for us over the next 6 months or so. The one thing that will be hard is that Jackson already misses Cafe Rio and their Creamy Tomatillio Dressing, rice and black beans.

One big thing that was stressful is the list of things that had to be cleaned before Jackson could come home. Because his immune system is so fragile we had to "Spring Clean" our house before he can come home. The Bone Marrow Team gave me a booklet of things we had to have cleaned, and that list was long and detailed. Thank goodness we have such a wonderful Ward Family and incredible neighbors that helped me all day yesterday to get things ready. I have NO DOUBT that I could not have accomplished it all by myself.

We get one week at home. One week to recover and get rejuvenated before we go back for round two. One week will go by so fast we already have plans to put up our Christmas tree and to enjoy Thanksgiving at home. I am sure we will fill the time with lots more fun stuff.

We can't go anywhere for Thanksgiving because of the germs, so this will be the first time I have ever cooked an entire Thanksgiving feast all by myself. Wish me luck!

Yahoo!!!

This was the picture Brian sent me this morning. What a relief.

Tubes and Pumps

Things are somehow moving forward. And the days are passing even if they are slow and filled with pain.

Jackson's counts are at zero, which is expected but not fun.

When his counts are at zero he has no immune system and he can get sick super easy. This round has been tough. Jackson has been in incredible amounts of pain due to c-diff that he tested positive for and also the mucusitis that is caused by the chemo. Basically he has mouth sores in the lining of his stomach which is very painful.

Jackson is hooked up to six different pumps on his IV pole. And throughout the day and night he often has all six pumps going. He is currently on five different medicines to fight off infections. Three are antibiotics, one is an anti viral and one is an anti fungal. The doctors started Jackson on a steady flow of Morphine to help ease his pain The doctors have also started Jackson on TPN which is IV nutrition- because he hasn't been eating anything.



The other day Jackson wanted to eat a donut but he is on a low microbial diet and they didn't have a donut that met the special low microbial diet requirements so Jackson settled for a muffin. Jackson took a big bite of the muffin and started to cry. I asked him what was wrong and he said that he wants to eat but that nothing tastes good. Chemo sure messes up Jackson's taste buds, and with Jackson's sore stomach from the mouth sores he hasn't eaten more than a gummy worm in three days.

When Jacksons counts are at zero it seems like things just keep getting worse and worse. At the beginning of this round when Jackson had to take several showers a day his skin really dried out and he got a big sore around his central line. Since Jackson has no white blood cells, his body has no ability to heal itself he still has a big sore under his bandage. Monday was bandage change day and it was with out a doubt the most painful bandage change we have ever endured. When we took off the bandage it ripped off some of Jacksons scab and then we had to put alcohol on the scab and on his super dry skin.



I don't want to lie, this round has been more emotionall taxing for me. Far more emotional than I expected. Brian and Hailey were sick for the first 4 days so they couldn't come to the hospital. Finally Hailey got better and she could come see Jackson but two days later they declared the start of "RSV Season" and now Hailey can't come up to visit due to restrictions. I feel like our family really has been torn apart during this round. I leave the hospital every time in tears. I hate talking about cancer related stuff, sometimes it overwhelms me. I hate how cancer has torn apart our family and how it is making my normally healthy boy feel sick and lay in bed all day. I hate that Jackson screams out in pain consistently all day long. I hate seeing him nauseous and miserable.

I know things will get better and that we are taking the steps to cure Jackson's cancer, but this isn't an easy road we are on. Right now I am praying for white blood cells because not only does that mean we get to go home, but more importantly to me, that means Jackson will start to feel better.