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.

Shake'n'Bake

Turns out that Jackson's fever, shaky feeling and cold was all related to one of the 4 antibiotic drugs that he is on right now. He is on the drugs mostly as a precautionary, because he has ZERO immune system. The one drug that he got is known to cause what our nurse called "Shake'n'Bake" in about 3% of the kids, and apparently Jackson was part of that 3%.

Shake'n'Bake refers to the shaking and shuddering that Jackson was doing yesterday, and the "Bake" part refers to the fever.

Thank goodness they have other drugs, and they took him off of this one. I just wish I would have known before hand, because he was a very unhappy boy yesterday.

So it begins

Today is Day +4. His counts are at zero, he is nauseated, cold and shaky. He also tested positive for C-Diff this morning. Hopefully things don't get worse.

Passing Time

Jackson spent several hours playing basketball today at the hospital.

I have to brag a little; I have the most creative husband ever!

1st Bone Marrow Birthday

Yesterday was Jackson's very first Bone Marrow Birthday. I have to mention that it is his first, because he will have three Bone Marrow Birthdays.
So far, things are going very well. We got admitted in the hospital on Friday, and Jackson got the two separate chemo drugs both on Friday and on Saturday. Jackson started out loving the showers, but by the third one, he was tired of the shower, and super upset that he had to have his central line site cleaned over and over again- basically 4 bandage changes a day, and they are extremely painful for Jackson. Thank goodness he's done with the showers for this round!Jackson waited very patiently for Daddy to arrive at the hospital. He watched out the window non-stop for about 20 minutes waiting for our car to drive through the security gate.

Yesterday was exciting and interesting and even a bit anti-climatic. The entire nursing staff and some of our favorite housekeeping staff all came into Jackson's room at the same time and sang "Happy BMT Birthday" to Jackson to the tune of "Happy Birthday". They sang loud, and cheered lots. It was all very exciting.
Once everyone left the man who was wearing the white lab coat brought in with him the big Bio-Hazard canister. He did lots of prep work to thaw out Jackson's stored stem cells.

Once the cells were thawed, he handed the bag over to our nurse, who hung them from the IV pole, and they slowly made their way down the tube into Jackson. It only took about 10 minutes for all of the cells to get to Jackson.

Now we wait for them to start growing (the doctors call that "engraftment"). Before his new cells grow, however, the old cells have to die completely.

Here's a very simple explanation of Jackson's Bone Marrow Transplant (BMT). Jackson's current bone marrow is cancer free, so in theory, he doesn't technically NEED a BMT. However, the research shows that AT/RT is a very stubborn tumor, and doesn't respond to more gentle chemo drugs. So, they hit the tumor with super harsh chemo, to kill every quick growing type of cell (the tumor as well as hair, and other things). Because the chemo is so harsh, it also kills quick growing cells like stem cells. Once stem cells grow up, they turn into bone marrow, and because the chemo will kill all quick growing cells, Jackson's bone marrow is now non-existent. To help Jackson have bone marrow again, they did what they call Stem Cell Rescue or a BMT for Jackson. They gave him new bone marrow or stem cells, and now we wait for the stem cells to turn into marrow. When that happens, his counts will come up (engraftment) and we get to come home.

Because Jackson's tumor is so stubborn, we will do this three times, and hope that the process has destroyed the cancer that is in Jackson's head- and that he can again be cancer free.

On an interesting side note: When they freeze the stem cells, they have to add a preservative called DMSO. DMSO helps the stem cells not die during the freezing and thawing process. But because the stem cells have DMSO in them, they had to pre-medicate Jackson before they could give him the transfusion. They gave him hydro-cortisone, Benadryl, Manitol and Tylenol. All of those help prevent some of the side effects of DMSO, but something they can not prevent is the smell that comes with DMSO. The smell is NASTY. It smells like creamed corn. The entire hospital room smells like it, and Jackson smells like it (especially his breath). The smell will probably hang around for 2 or 3 days and let me tell ya- I don't want to eat corn any time soon. Blech.

Back Again

We got admitted back into the hospital yesterday morning to start Jackson's first of three Autologous Bone Marrow Transplants.

When we got here we went through the standard height and weight measurements. Then they repeated his EKG because they somehow lost the previous results.




We hung out all day watching television which was wonderful for Jackson. We don't watch much TV at home, so he feels like it is a treat.

He got his chemo in the afternoon and now we are doing our best to prevent some side effects. The chemo he got (Carboplatin and Thiotepa) cause mouth sores which can cause more serious infection later on, so to prevent that we do 'mouth care' four times a day. He has to brush his teeth and then swish and spit two different mouth washes. Surprisingly the mouth care has caused the biggest fits so far- it is just one more thing that is out of his control.

Thiotepa is the chemo drug that I have been most worried about. It is known to cause AML (another type of cancer- leukemia) down the road. But more than worrying about that, I have been freaked out about the more immediate side effects. Thiotepa exits the body through the skin, and if there is anything tight or constrictive on the body it causes burns. To help prevent burns Jackson has to shower 3-4 times a day for the first 4 days of our hospital stay. And they change his bedding that often too.

Jackson is SO exited to get to shower. Because nothing adhesive can be on his body he can't wear a bandage over his central line and they make us wash EVERYWHERE with soap really well. So, he gets to have a 'normal' shower. He is in heaven. He hasn't had a regular shower since June.






He wears a twill tape necklace to hold his tubes in place so that they dont get pulled out and we are figuring a way to keep the end caps dry while he showers.

This morning his shower has already lasted almost half an hour, and as I type he is still in the shower. I can't get him to get out. Last night he said "the shower is the best part of bone marrow". He also told me "I never felt so good with my line unpackaged".


So far, so good. Today is his second and last day of chemo, then tomorrow he gets a "rest day". And Monday he will get his new bone marrow. After that, we wait for the new stem cells to grow. From here we hope for the best and try to prevent complications.

Here is a little reminder that tomorrow is the day our ward is fasting for Jackson. Thank you in advance for your prayers.

Fasting

Our ward is having a fast on Sunday, November 6th for Jackson.

We would like to invite anyone who is willing or able to join with us.