Tuesday, August 30, 2011

Buying some stock.

Jackson's taste buds have changed a lot through out chemo. After round 1 he only wanted chips and salsa, but after round 2 he only wants Velveeta Shells & Cheese. Breakfast, lunch and dinner, he will eat it.


He loves it, and he calls it "cheeseandshells" and he makes it into one word, all smooshed together, and I don't think he even separates his teeth when he says it. We are going through LOTS of Velveeta shells & cheese. Enough that I am thinking of buying some stock in Kraft so that we can get a return on our investment.

Monday, August 29, 2011

Kindergarten or Bust



Today was a BIG day for Jackson. Today he went to the first day of kindergarten. He was so excited, and said that he would help any of the kids that were sad and he would help them find a friend.

I didn't cry. I thought I would. I was extremely proud of my bald headed little guy. He lined up with the other kids, waved goodbye and went right into the class. He was confident, and not at all afraid that he looks different because he doesn't have hair.


If everything goes as well as we hope, he will get to go to about 60% of this school year.

I get to go to his class tomorrow and talk to the kids about Jackson and how he has cancer. I am not really sure what I will say, but I'll get to talk about the monkey that will sit in Jackson's chair when he's not there. It's a wonderful program that we learned about at the hospital through the child life specialist. You can read more about it here. Jackson LOVES his monkey- it came in the mail today (perfect timing). Jackson decided to name his monkey "Charlie".




Friday, August 26, 2011

Radiation Mask

Today we went to meet the radiation therapist. He is a pediatric- neurologist- oncologist- radiation therapist. Basically he specializes in irradiation of brain tumors in children. He is a very smart man.

After the appointment I am a little less freaked out about radiation, but also more freaked out- if that is even possible. I feel more comfortable with the machine and the process. I feel confident that this step in Jackson's process will be very effective in shrinking the tumor. The part that I am more freaked out about is the long term effects that the irradiation will have on Jackson. Because his tumor is right next to his pituitary gland there is a great chance that he will have problems with his growth hormones- but we won't know about those problems for years to come. His hearing may also be effected greatly from all of the radiation. Among those side effects, there are also possibilities of learning delays and challenges for Jackson's cognitive thought processes.

During our appointment we met with the doctor, then we went through what they call "simulation". They took us back to a CT scanner and planned to make a mask for Jackson that he will wear during all of his radiation treatments. He is scheduled to go through 30 separate treatments during the next 6 weeks. While he gets the radiation he has to lay perfectly still, with out moving even a millimeter while they point the powerful x-ray machine at his head. To insure that he can hold his head perfectly still, Jackson will wear a mask that is custom made for him. The mask is then bolted to the table.

The process of making the mask was fascinating to me. Jackson was so very nervous about the entire thing, and after lots of tears the amazing staff decided that they should make a mask of Brian so that Jackson would know better what to expect, and so that it wouldn't be so scary.

Brian laid on the table, and Jackson helped Tarali get the mask ready. The mask was a flat sheet of plastic that is heated up in a pan of hot water. The hot water makes the mask pliable, and then the mask was stretched over Brian's face.



Brian didn't mind the whole thing, but poor Jackson just cried through the whole process. He said at one point "this is the worst day of my life" and "I am done. I want out of here." He also said that he couldn't breathe. The entire process took about 5 minutes, and to be honest, it was pretty sad to see my boy strapped to a table, miserable and I couldn't be of any help or comfort to him.

After it was all over, things were happy again though, because Jackson and Brian were now "mask buddies".

Jackson is pretty excited to go back, but only because one of the doctors (Dr. Watson whom we've never met) is quite the artist, and he paints the masks for the kids who have to undergo radiation. Jackson said that he wants his mask to look like Finn McMissile from Pixar's Cars 2 movie. I am pretty excited to see what Dr. Watson comes up with.

After the drama of making the mask we got to go and see a room very similar to the one that Jackson will go into while he gets his radiation done. The people the hospital were amazing with Jackson. They let him play with all of the buttons, and move all of the equipment around. He got to go on a ride on the machine, and all of the exploration makes me think that he will do great during his radiation treatments.


If he can't hold still for the radiation, they will have to sedate Jackson every single day. I really hope he can handle it, I don't want to have to put him through that every day. Also, if they have to sedate him everyday our appointment time will change from 15 minutes everyday to around 1 hour everyday.

Jackson has a "dry run" scheduled for next week, and if he can do the "dry run" with out sedation then they will proceed, but if he can't hold 100% still, then we will have to change hospitals, and appointment times. Radiation treatments are scheduled to start on Tuesday, September 6th.

Tuesday, August 23, 2011

Home Sweet Home

We were able to come home this time surprisingly fast! After the apheresis on Thursday was so successful our hopes got up pretty fast that we might get to come home on Friday. There were only 2 things that we thought would keep us from coming home. The first one was an MRI that wasn't scheduled yet, and the other one was the fact that Jackson was still on TPN (supplemental feeding).

The MRI got scheduled for Friday afternoon between 12 and 1 but we actually ended up down in imaging around 2:00. The doctor also said that he thought that Jackson's appetite should improve now that his counts came back up, and he said that we could go home with out the TPN.

The MRI went good. I am always amazed that Jackson can lay so still for so long inside that MRI machine. This MRI lasted an hour and a half, and Jackson did so great. He had to hurry out of the machine at the end to go to the bathroom, but other than that he did great.

We don't have the official results of the MRI yet, but we got a very brief report from another oncologist who said that the tumor looks minimally smaller, and that the most important part is that the tumor is "stable". To be honest, I was hoping that the tumor was gone- or almost gone so the fact that it is only minimally smaller is a bit discouraging to me. I am trying to remain positive though, and I am grateful that the tumor isn't growing at this time.

We came home Friday and Jackson hasn't stopped having fun since. He has so much more energy this time than he had after round 1. He has been playing with friends, and his toys that he has forgotten about. He loves playing with his little sister, and he makes her giggle all of the time. He has even been eating very well. Most things don't taste the way that they should, but he is managing to eat enough that I'm not too worried about him.

We went to Sacrament meeting on Sunday. We wanted to be on time so that we could get a bench at the very front so that the germs would hopefully be minimal. My heart just swelled with pride walking into the chapel holding Jackson's hand. I wanted to shout to the congregation how proud I was of my little cancer fighter. But at the same time I wanted to protect him.

Being home has been incredible. I can't believe we get to enjoy almost 7 weeks here together. During the time we get to be home Jackson will start kindergarten- they are actually going to let him go as long as he feels good enough and his counts are up! Jackson will also start his radiation treatments. Radiation makes me a bit nervous because I don't know what to expect. I have heard stories of what the side effects could be, but everyone responds differently so we'll just have to wait and see how Jackson does.

We have an appointment tomorrow with the oncologist who will help us decide if the treatment path we are on is still best for Jackson. Tomorrow we also get to go to the eye doctor to make sure Jackson's vision is as good as it can be. Friday we meet with the radiation doctor for a consultation for our treatments that start next week.

I am sure I'll blog less while we are at home, but I'm trying still for 2 times a week. Thank you all for caring about Jackson. It means so much to us to have your support.

Friday, August 19, 2011

Apheresis Success!

The apheresis went amazingly well today. The goal was to collect 15 million cells over a period of 5 days. If Jackson collected more than that they could stop before the 5 day mark.

Every day the nurse would draw blood and the lab would run a CD34 test to predict when Jacksons blood counts would come up. I was skeptical that they would be able to tell before hand, and honestly I was worried that we would miss our window. Turns out those Bone Marrow doctors really do know what they are talking about.

This morning they took Jackson down to the Procedures Lab to place a catheter in his left leg. Instead of riding in his bed to the surgery like most kid, the nurse and the tech pushed an empty bed through the halls and Jackson followed behind driving his remote control car.


Today between 12:15 and 6:30pm Jackson was hooked up to an apheresis machine. During this time the machine cycled through his blood six times. The machine separated his red blood cells from his platelets and his white blood cells. The white blood cells were collected in a bag and after the collection was done we waited patiently for the lab to count how many cells they were able to harvest.



Jackson blew his goal of 15 million out of the water!! They collected 33.8 MILLION cells today. More than double of what they were hoping for. They actually wanted 15 million cells per kilo- so a total of 270 million. The total they actually got was 608,400 million. That's a lot of cells in one tiny little bag.


My prayers were answered. Your prayers were answered.

The catheter came out tonight which was a bit traumatic. This has been a long, emotional day. But it has a happy ending.

As long as Jackson starts eating again we should get to go home tomorrow. Our family will be back together again soon.

The next thing I am starting to worry about is the upcoming MRI Jackson has. Through that scan we will see how well his cancer is responding to the chemo drugs.
One step at a time. We can make it through this- one step at a time.

Thursday, August 18, 2011

Apheresis

Apheresis (stem cell rescue) is in process. I am learning SO much!!

I have some better pictures that I will post later.




Our apheresis supervisor (Amber) thinks we may be able to get all of the white blood cells we need today over the 5 1/2 hour treatment. We should know tonight around 8:00 how many cells they were able to rescue. Our ideal number is 15 million.

So far, so good.

Wednesday, August 17, 2011

Movin on up

Jackson's white blood count (WBC) went up today! Yesterday he was at .2 and today he was at .7. That means that his ANC isn't far behind.

Tomorrow morning the doctors are taking Jackson down for surgery to place a new apheresis catheter in his leg. The catheter will only be in for a little while (up to 5 days) while they collect Jackson's stem cells. Basically it will be like when you donate platelets- they hook you up to a machine and suck the blood out of you. Then they spin the blood, and keep the part that they want and put the rest of the blood back into your body. This process is called "apheresis". They will be doing this to Jackson to try and harvest 15 million white blood cells from Jackson to freeze and use later during his Bone Marrow Transplant.


His catheter will be similar to this, but since he is so young/small they are putting his catheter in his leg and using his femoral artery.


Jackson will be going through 3 rounds of Bone Marrow Transplant (BMT) after his 6 weeks of radiation therapy. During the BMT he will get chemotherapy that will kill off all of his bone marrow, then because it will be all gone, they will give him new marrow back. There are two types of BMT- one that uses a third party donor, and one that uses your own cells. Jackson will be getting the one that uses his own cells. This will help his own blood counts come up faster and he will also avoid the rejection that often happens with traditional BMT. Because he is getting his own marrow back, they have to do the apheresis now to harvest his stem cells.

I know- it's confusing. I don't know if what I typed makes any sense at all, but I'd be happy to explain it to any of you if you corner me and ask me about it.

Tonight I'm asking any/all of you to pray for Jackson to do well during the line placement- he'll be awake for the entire thing and I think he may panic a bit. I am also asking you to include a prayer for his little body to produce LOTS of white blood cells so that he doesn't have to have the apheresis catheter in for more than one day.

As soon as they get 15 million white blood cells we get to come HOME! Hooray! I can't wait to have my entire family back under one roof again.

Tuesday, August 16, 2011

ANC= 0

Jackson's counts are still at zero. We don't know why they are taking so long to come back up, but we are trying to wait as patiently as possible. I won't lie, it has been a bit rough at times. Sunday in particular was my least favorite day. Sunday Jackson was down right mean. I know that his morale has been down the last several days- he has been stuck in his same room for 12 days now. They won't let him leave his room while his counts are at zero. So, unfortunately he was mean on Sunday, but his attitude has rebounded, and he is back to his happy self most of the time now.

Looking back on this someday, I am sure I will read some entries and cry. I already go back and read about some days and cry. I also want to look back one day and see some of the good. Today we had a good day overall. And although Jackson's counts are down, we got to get out of the room for a little while.

We went this morning down to the Audiology office to get Jackson's hearing tested. He did so great during the test and it was nice to go for a walk. The bad news about his hearing test is that the chemotherapy is starting to damage Jackson's hearing. So far the damage is very minimal, but his ability to hear the upper range of notes has changed, and chances are that the damage is permanent. One day Jackson may need hearing aids- but there are worse things in life.

Today Jackson had Elliot and Joe visit again. Elliot is Jackson's favorite therapy dog, and Jackson just loves snuggling with Elliot on the bed. Joe is Elliot's owner, and we really like Joe too. Joe seems to genuinely care about Jackson, which makes me LOVE Joe. I have a soft spot in my heart for anyone who loves my kids.

This afternoon Jackson smiled and laughed more than I have heard in a long time. Erika was our nurse today, and she was so much fun. We did puzzles, and had a little dance party. Then Jackson decided that we should squirt Erika with a syringe full of water. So, we filled up the syringe, and pushed the nurse call button. As soon as she waked in, Jackson ambushed her. It was so funny! Jackson LOVED it! After he got Erika, Jackson decided that it was so much fun that he wanted to squirt more people, so we went out to recruit some nurses, techs and even doctors to squirt.

After Erika got soaked, Jackson squirted Sara. Check out her wet scrub top.


Sara wanted to help Jackson get Dr. Fluchel, but she had to go help another patient, so she called in Lindsey to help in the ambush.


Then Lindsey teamed up with Jackson and they got Dr. Fluchel (one of Jackson's Oncologists).



Through out the afternoon Jackson squirted: Kathleen, Breck, Nancy, Sara, Erika, Dr. Fluchel, Dr. Jack, and Laura. I loved seeing his smile, and hearing his naughty little giggle. Everyone was so nice and reacted so great. The staff at PCMC is really incredible.

Soaking Sara:
video

Soaking Dr. Jack:
video

One of the nurses said once that the Oncology unit is a depressing place to be. I would argue that I disagree. I am sure that there are days that are hard, but there are days like today that make the hard days more bearable.


** I REALLY think his counts will be up tomorrow. Keep your fingers crossed!**

Saturday, August 13, 2011

Zero. Zilch. Nada. Nothing.

Yep. Jackson is still at zero for his ANC. Nine days, it's far longer than anyone guessed. Because his counts still aren't coming up, the bone marrow transplant team has moved Jackson to the "hard to immobilize protocol".

This new protocol basically involves giving Jackson a new type of drug that should help his body grow white blood cells faster. He will get two doses of one drug two times a day through his IV. He will also get another drug at night via a shot (Jackson HATES pokes!).

Today he got two shots in his legs. Did I mention that he hates the pokes? He earns a yellow bead for each intramuscular injection so that makes it seem almost worth it. The medicine that he gets for the blood cell growth will cause incredible bone pain, and I'm sure it will be a long night. The nurses said that the bone pain is a lot like growing pains that kids sometimes feel when they go through growth spurts- only worse.

So, you want more of a Jackson update other than just his ANC? Here's a little break down.
  • Jackson has been stuck in his room for 9 days, but one of the doctors said that after visiting hours are over, and when the halls are quiet that Jackson can go out of his room and ride the bike (as long as he wears a mask). Jackson LOVES this, and has enjoyed getting out of the room even for a few moments.
  • Jackson has a little friend that has been in the ICS unit also this week. Annabelle is 4 and she is fighting Ewings Sarcoma- I think. She is doing amazing in her treatments, and has seen lots of progress already. We LOVE seeing Annabelle and her mom Sally in the halls. Everytime we talk about Annabelle, Jackson just lights up. Annabelle has also been riding the bike lots this week, and every time she rides past our room Jackson gets excited to see her. She even brought Jackson a picture today and a balloon yesterday. I love that we have friends up there.
  • We move Jackson's furniture in his room almost every day. We race remote control cars, and build jumps for them to go off.
  • Yesterday we made a hopscotch on the floor out of medical tape. Jackson loves it, and I like that it gets him out of bed. Jackson also likes that the nurses, techs and even some of the doctors take a moment to do the hopscotch. It is very popular.

  • Jackson and I made some t-shirts the last few days using the freezer stencil tutorial by iammommahearmeroar.blogspot.com. All of the nurses LOVE that too.
  • Jackson has had a couple of therapy dogs come and visit. I am surprised at how excited he gets when they come in our room. His favorite dog is Elliot. You can find Elliot on Facebook- his name is "Elliot TherapyDog".
Elliot TherapyDog

Hopefully that's enough of an update for now. I'm working on an upcoming post of some of my favorite things in the ICS unit. There are some very wonderful things there!

Thursday, August 11, 2011

Still at Zero

Seriously? How long is this kid gonna stay at zero? Today is the 7th day at zero. Some kids stay at zero for 20+ days, but Jackson gets a shot of Neupogen every day that is supposed to help his counts come up faster. Poor kid HATES that shot- he screams uncontrollably every time. I am getting so anxious for his counts to come up because then we can get his stem cells collected, and then we'll be on our way home.


Man oh man. Pray for Jackson to grow some white blood cells!

Wednesday, August 10, 2011

Dreamin'

This is the bed that Brian and I take turns sleeping in every other night. It is a chair that pulls out, and it isn't that bad as long as you have at least 3 pillows.



Sunday, August 7, 2011

Layhe Service

Jackson got moved to the Layhe service today because he keeps having fevers. They did blood cultures, but nothing has grown yet, so they don't know why he is having the fevers. But they are treating him with 2 different antibiotics to help with any infections he may have.

I went to the hospital tonight and brought dinner -I actually got to cook it after church! How nice it was to be able to cook!

When I got the the hospital I was shocked to see all of the furniture in Jackson's room moved around. Brian had the bed pushed up against the wall and his rocking chair was in the bathroom. They had to move the furniture to make room for the remote control car jumps.

I know this isn't a great picture, because it's from my phone, but you get the idea.


Even though Jackson's counts are at zero, and he is having fevers he was in really high spirits today. He loves racing the cars with his Daddy and it seemed that they had a pretty calm day. Most of his stomach pain is gone now which is a relief for all of us. He seemed to have more energy today but still took a long nap after he got his platelet transfusion.

Later this week the doctors expect his counts to start coming back up. At that time we will get started on the Stem Cell Rescue which will be used later on in Jackson's treatment during his Bone Marrow Transplant rounds of chemo (he'll go through these 3 times). I will explain more about Stem Cell Rescue and Jackson's Bone Marrow Transplant in a future post.

Usually when the ANC goes up, fevers go away, mouth sores go away, and the body has the ability to heal and fight infections. Now it's just a waiting game.


Saturday, August 6, 2011

At the bottom

Jacksons counts hit zero yesterday (his ANC). This is expected but we don't like it. Zero means his little body has no ability to fight infection. That means we want to limit visitors now to help protect Jackson as much as possible.

Yesterday his counts hit zero and he has already spiked a fever and is already on antibiotics.

He is starting to have stomach pain and mouth sores again and has pretty much refused to eat anything the last 3 or 4 days. Because he isn't eating they put him on the TPN (all his nutrition goes in through his central line now). When he does eat he has been throwing it up and feels very nauseous.

We are still on the regular chemo service and hope to stay there. When kids start having complications they upgrade them to the "Layhe" service- which means that the doctors check on him several times a day.


Today is day number 12. We are right in the middle of round 2. This is where it gets tough for me. I start missing 'normal' about now. I start worrying more about Jackson getting infections and having complications. Jackson starts feeling worse and because of that he starts getting demanding and irritable.


The feeling of missing 'normal' has been increased the last couple of days. I was supposed to finish registering Jackson for kindergarten but he won't be going to kindergarten. I never thought I would be the mom that cries on the first day of kindergarten. I have been excited for him to have that experience and to make new friends. But now I am pretty sure I will be crying on the first day of school- but only because my boy doesn't have that opportunity yet. Stupid cancer.

Thursday, August 4, 2011

WONDERFUL NEWS!

We have been waiting for over 7 weeks for the some of Jackson's test results. AT/RT is a highly malignant cancer which can be genetically linked. That means that every one of our kids could carry the gene, and could be at a higher risk of getting the same cancer that Jackson is fighting.

The blood test had to be sent to Philadelphia and because it is genetic testing, it takes a LONG time.

7 weeks later and we got the news today that Jackson does not have the genetic marker. That means that it is NOT GENETIC! YAHOO! I cried when the Doctor told me the news today. It was such a relief to know that I can stop looking at my 22 month daughter and wondering if she is growing a tumor insider her little brain. What a blessing. This is a HUGE relief for Brian and I.



I can breathe a little easier tonight.

I wonder how much genetic testing costs? I guess we'll find out and maybe I'll post it here, just in case anyone else is wondering. I'm sure it will be another 7 weeks until we get the bill.

Tuesday, August 2, 2011

Last day of freedom

Today was probably Jackson's last day of freedom for a while. His ANC (or neutrophil count) is on it's way down and once it drops below 500 they don't let him out of his room anymore.

We took advantage of the freedom today and Jackson rode the bike around the hospital. Man he can ride fast!



We also ran into Jacksons little friend Jessica on our bike ride. She is one of my heroes for sure. She has been through so much in her short 5 years. We met Jessica and her mom during our first stay at the hospital and seeing them again tonight was a wonderful surprise. Jessica has been battling kidney cancer for a while she has been on a tough road but she is almost done with her treatments. I already love her mom, Chandra- what an amazing woman.




**On a side note-
Today is also mine and Brian's wedding anniversary. I fall more in love with him everyday. Thanks to Becky and Jill for taking care of our babies so that we could go out to dinner tonight- you guys are the best!!

Monday, August 1, 2011

Hungry Boy

The difference from this hospital stay compared to the last hospital stay has been night and day. Last time Jackson was sick, and tired and weak. He ate very seldom and when he did eat, he would eat a few bites then throw it all up. This time around has been almost the exact opposite. Jackson has been eating non-stop and he is eating strange combinations of things. One morning for breakfast he had a cheese quesadilla and a Butterfinger milkshake. He ordered chicken nuggets and mashed potatoes with gravy with another main course of chicken stir-fry. He has had a big dill pickle with a side of chips and salsa. He loves the Butterfinger milkshakes. And for days pretty much the only thing he would eat was chips and salsa- now it makes sense to us. The chemo drugs destroy your taste buds so nothing tastes good but the salsa had such a strong flavor that he could actually taste it so that's why he loved it so much.

The hospital has room service and Jackson can order pretty much anything that his little heart desires. One morning I took a picture of his breakfast. I thought it was funny to see a tray full of food for one little guy. If you look closely you can see Frosted Flakes, a cupcake, pancakes with bacon, and a Butterfinger milkshake. He ate almost everything except for the bacon and the milkshake.


Last night he had a taco for dinner. When it came up from the kitchen, he smelled it and immediately started dry heaving. So, I moved it away from him. I asked him if I could eat it since I didn't get dinner, and he said "sure". I took one bite and said that it was good. He asked if he could try it. he tasted it and LOVED it. He ate the whole thing and asked me to order up 2 more. That wasn't the first time that he's gagged at something then ate a ton of it a few minutes later. He also gags at the smell of corn dogs, but then eats them right up.

His chemo appetite is something that takes some getting used to for sure. I wonder what will happen when we come home and go back to my regular rule of "take it or leave it".

Because he is eating he has had more energy, and another piece of good news that goes along with eating is that he is no longer loosing weight. He actually has gained a little bit this round and is back to his original pre-treatment weight.



** On a side note- overall this round has been wonderful but today was eventful because it was the first time this round that he has thrown up. The chemo drug that he got last night (CisPlatin) is supposedly famous to cause nausea- and boy oh boy the nausea has been bad all day today even with the use of multiple anti-nausea drugs. Hopefully by this time tomorrow night the nausea will have passed.

Even with the nausea and the vomiting, Jackson has been in very good spirits and has been to the playroom and ate dinner outside tonight. I love it when he feels good, it makes me think "we can do this!".