Remission!

We got the news last night that JP is in remission! That means he responded to the treatments the way they expected he would. That doesn't mean he's completely free of leukemia cells, but it does mean that approximately 99% of them have been killed. That sounds good, but the doctors told us he probably started with a billion leukemia cells and leaving the 1% still means 10 million cells and it only takes one single cell to keep the cancer ball rolling and take over his body. It's crazy to think that our boy is in remission after just a month of treatment, but we have to spend the next 36-42 months doing chemo anyway. We are officially in the "consolidation" phase, and we still don't know what that means. We'll find out on Tuesday.

For now, we're giggling and making pizza for dinner. Today is a good day.

A Buzz Party!

After Elsie's blessing on Sunday, we held a Buzz Party. This post is mostly pictures, but it started with an invitation:

Then there was the 4-foot tall Mr. Lightyear, who JP was thrilled to finally get to play with. When we got in the car to drive to my parent's house, he saw Buzz in the back and said, "Mine Buzz! Mine friends got it for me!" We just laughed and said, yep, your friends did get it for you!

The brave souls before the clippers came out: 

I got to shave Josh's hair first. JP pretended to help.

Then it was Josh's turn to shave Matt's head. Anyone else see the Mr. T resemblence??

Then Matt took to Mike's head... Mike refused to shave his nasty rat's tail on the lower right side of his head. With his bald head and this section of long hair he just looks silly, but whatever, he's a teenager and we all know that means they are cool.

Jessica got to shave Greg's head, but then Greg decided it needed to be shorter...

So Josh took over.

 All the while, JP and Mike were striking poses...

And showing off their muscles!



I don't have a picture of Blaine or JP getting their hair buzzed... I'll find some and post later. I did catch myself choking up when I was buzzing JP's hair. When everyone else was shaving their heads it was all fun and games, making silly hair-do's before shaving it all, but when it came time for me to shave JP I just couldn't do it without crying. My sweet boy's beautiful blonde hair is gone. My dad saw my tears and scooped up a handful and saved it for me. I know it will grow back, but in the meantime my boy doesn't look like my boy and that makes me cry.



After everyone was shaved bald JP got to find some presents - a Buzz dish set and an awesome Buzz cup! One of Josh's co-workers bought JP the Buzz cup at the new Disney store in City Creek just for this weekend. Small gestures like that remind us how much we are loved.

All said and done, he's a pretty cute bald boy!

JP's Chemo Angels

When JP was diagnosed, we were told about a program called Chemo Angels. This group of volunteers are assigned to cancer patients undergoing chemotherapy and send a card or small gift to the patient on a weekly basis to cheer them up. What an amazing thing and what a commitment on their part! JP is tickled to death that he has two of his very own angels - Angel Donna and Angel Eileen. We started receiving their mail last week.

Opening his introduction letter from Angel Donna... He was sort of mad at me for pulling out the camera.

His new Lightning McQueen and Mater and bag of chips from Angel Eileen. Of course, we opened the Cheetos first and foremost.

And today he got another note from Angel Donna with a booklet of stickers. He was pretty excited!

How grateful I am for our angels! Eileen is from New York and Donna is from Pennsylvania. These complete strangers are taking time out of their busy schedules to brighten my son's day. We are only in the "program" for his first year of treatment and I know it is going to help put a smile on his face every single week. I look forward to when this is all over and JP and I can become Chemo Angels ourselves and pay it forward to some other very deserving kids.


We are truly blessed. People are so good.

Day 29

We knew today would be a hard day, and it was. Last night we tried to keep JP up as late as possible since he wouldn't be able to eat anything after midnight in preparation for his little surgery but by 10:30 he was begging for "mine bed!" We put him to bed and tried to get some sleep ourselves. Thankfully he slept until 5:00 this morning, but from 5:00-6:30 he cried and yelled for any food he could think of. When we didn't give him a roll, he asked for mac & cheese. When he didn't get that, he asked for pizza. When that didn't happen, he asked for cereal. And so it went until he had listed literally every food he has ever eaten in his life. At 6:30 Josh decided a drive up the canyon was in order so they left Elsie and I at home. JP fell asleep and Josh enjoyed some peace and quiet. When they got home at 7:45, the crying/yelling resumed. Our appointment at clinic wasn't until 10:30, and boy it was a long couple hours before we left for PCMC. Of course, we couldn't leave until JP was dressed and he insisted he wear "MINE NIKE SHIRT!" Being the wonderful mother that I am, I had not washed it from 2 days ago (it's the t-shirt and shorts in the last post where he's dancing) and when I told him it wasn't clean he threw a huge tantrum. I pulled out a brand new Utah Jazz t-shirt and offered several other basketball shorts and he wasn't having any of it. It was Nike or nothing (he is is father's son after all...). Sometimes there are battles worth fighting over and sometimes there are TJ Maxx stores 5 minutes away that will have a Nike outfit for $12.

At clinic, JP yelled at everyone and as soon as we were in our room he started demanding my bag. He knew there were goldfish and an uncooked mac & cheese packet in there (he asked me to bring them) and he also knew we were at the doctor's office so he figured it was time to eat. We had been telling him all morning that he could eat when the doctors were done seeing him, but he obviously only heard the eat-at-the-doctor's part.

He wore himself out and wanted his mommy. Of course I was happy to hold him and he was out in just a few minutes.

Once we were done at clinic they sent us to the RTU for his LP (lumbar puncture) and bone marrow biopsy. We were early, so we were shown to our room to wait. JP still wanted me so we laid on the bed and 40 minutes later we woke up. Seriously, snuggles are the best. Thanks to Josh, we now know what I look like while sleeping!

The procedure took about an hour and a half and we'll have results sometime next week, hopefully by Tuesday. When they called us back, our sweet boy was laying there looking miserable. I really hate this part of treatment because he feels so awful. Ok, I am truly grateful for the treatment but I really hate that cancer has taken over our lives and now dictates where we will be for the next few years. My son's childhood is not going to be what I thought it would and for that, I hate cancer and anything that relates to it. I know he needs the treatments and procedures, but it rips my heart out every time I have to take him to a place he doesn't want to be, hold him while they poke and prod him and then send him off for a procedure where I just have to trust he's going to be ok. I know we are in amazing hands, it just breaks my heart to have to go through all these motions.

He had a really hard time waking up this time. He was yelling, hitting and swinging his head back and forth trying to head butt me. We have never seen him so angry and I choked up a few times. It's just the medication, it's not our son. We are no longer on the steroids and they told us it will take a few days before they are completely out of his system, and we are so happy that our boy will be coming back to us soon.

As far as his levels, his ANC is up to 3.1 (normal is 5.0). This is amazing, but sometimes the steroids can give a false sense of health. His platelets are up to 221,000 (normal is 150-400,000) and his white blood count is up to 6.5 (normal is 6-17). We will have some blood drawn a week from Monday to see if JP is healthy enough to start the next phase a week from Tuesday. Yep, that means we will not be going in at all next week! 10 days without a visit to the hospital, what are we going to do with ourselves?! I joked that we should go on a mini-trip to St. George or something... but I work weekends and Josh doesn't have a lot of hours he can take off work so it probably won't happen.

The doctors said we can start taking him out, but not to places like church, the grocery store or malls. Basically if lots of people will be there, we won't be. But we are looking forward to some play dates and trips to the park in the coming weeks so we can get a sense of normalcy back.

Thank you for all your thoughts and prayers today. We feel so blessed to have so many friends and family that love and pray for us. We love you all and pray for you too.

Whoa buddy!

 These steroids have kicked in and taken over my child. I hardly even recognize him!

Here he is the night we were admitted, 4 weeks ago:

 

Here he is 2 weeks into treatment, 2 weeks ago:

(I love this picture - he picked out his own outfit!)

  

 

And last night, picking his nose and performing his "Sexy Know It" dance:

We are nervous for our appointment on Friday. It's the big one - another bone marrow biopsy to see if there is evidence of any more leukemia cells in the marrow. If there are... it's not going as well as we hope it would and treatment intensifies in frequency and dosage. If there aren't then HOORAY! and we will move into the next phase of treatment called Consolidation. I don't know what that entails but I do believe it means no more steroids. Yesterday JP woke up and ate a bowl of Fruit Loops. Immediately after finishing he told me he wanted mac & cheese. I told him we will have that for lunch. He yells and screams at me for mac & cheese and finally I set a timer. I do this once in a while so he can watch the numbers count down and look forward to something. Unfortunately for him, I set the timer for 85 minutes. He knew that was a long time to wait. I told him it's tough, but it is what it is. A little later I was changing Elsie's diaper and he started into his fit again, climbed off the couch, kicked me, yelled "MINE MAC & CHEESE!" then climbed back onto the couch. I laughed because he intentionally climbed down to kick me. Who does that? I know it's the steroids and it was only funny because the kick didn't hurt and he thought that would make me get his lunch faster. Oh boy, have I mentioned I can't wait to be done with these steroids?

We will be fasting on Friday with our cute boy. He can't eat until after the surgery (another reason I'm nervous for Friday - a starving 2 year old on steroids! Yikes...). Anyway, we would appreciate any thoughts and prayers sent our way. Fingers, toes, arms, legs, I'll have everything crossed!

Day 22

Today was another relatively simply treatment day. We arrived at clinic, did JP's vitals and got to our room. He was not amused. There they drew labs and sent us to the infusion area for his chemotherapy. This process took about 2 hours, which is relatively fast compared to other days.

The big news this week is that JP has gained 3 pounds since last Friday. He is getting so round - we're worried he might need a diuretic to help him get rid of some of that water! He is constantly eating mac & cheese and rolls. I bought a box of Easy Mac from Costco last Friday and had to go buy 2 more boxes today - the kid is eating two to four of those things a day! I didn't realize when I was buying Easy Mac in bulk I was supposed to buy it in bulk quantities of the bulk box haha!

We noticed the other day he started getting red dots on his chest. I saw 3 on Tuesday and today there are 20 or 30. They say if they aren't bothering him and not coming to the surface like hives, we shouldn't worry about them. It sure is strange. He has also started sweating a lot. Whenever he sleeps he wakes up drenched in sweat. His shirt is usually soaked through from his shoulders to his chest and his pillow has a huge circle of sweat. It's pretty gross but the doctors say it's a normal side effect of the steroids. Oh, how we can't wait to be done with these awful steroids!

I love that JP is at that age where if you tell him not to do something, he does it. This is extremely helpful when I want him to smile for pictures. All I have to say is, "Don't you dare smile at the camera!" and I get the cheesiest smile. Love him!

In other news, Elsie is 11 weeks old and JP is giving her chubs a run for their money!

How our lives have changed

Written Tuesday, March 13th:

I thought I would write a little bit about how our lives have changed, besides the obvious cancer diagnosis.

We almost never leave the house. Josh goes to work and comes home. And we stay. JP asked to go for a car ride yesterday. That's how we get out of the house. We don't go anywhere, but we get in the car and drive somewhere just to drive back home.

Josh and I can't go anywhere together. If Josh is gone, I am at home with the kids. If I need to hit up the grocery store, I do it alone or with Elsie. Josh and I did get to go take the sacrament together on Sunday because his mom was in town, but I honestly don't know when we'll go to church together again.

Nobody gets a full night of sleep. Last night's schedule? JP went to bed around 9:00. Josh went to bed around 11:00. Elsie and I were up until about 12:00. JP woke me up at 3:00 for 2 rolls and a cup of juice. We were back in bed around 3:30. JP woke me up again at 5:00 for mac & cheese. As I was waiting for the mac & cheese to cook, I laid back in bed, which woke Josh up. I complained about how JP was being a "brat" and he reminded me it's the medication. I know that, I'm just tired. The mac & cheese was done so I took it into JP. He finished around 5:30. Josh got out of bed at 5:45. Elsie woke up hungry at 6:00 and JP was up for the day at 7:00.

Here we are this morning at 5:00. Someday I will think it's funny (ok so I already think it's funny, just not in the moment of serious sleep deprivation) so I asked Josh to take a picture! Isn't he the cutest kid? He's gaining a ton of weight and rounding out which just makes him even more adorable!

Our hands are always dry and cracking because we are constantly washing and sanitizing. If we are going to do anything with JP - hand him something, get him dressed, change a diaper, hold him, make some food he's going to eat, etc. - we have to wash and sanitize our hands first. I haven't counted how many times a day I'm washing and/or sanitizing, but I wouldn't be surprised if it had 3 digits.

Every surface in the house is sprayed with Lysol Disinfecting Spray at least once a day. Countertops, cupboards, handles, play bins. We are very serious about killing any germs!

We can't just wash our dishes. We have to wash the dishes with a washcloth - not a brush of any kind - and then let the dishes sit in hot water with bleach for at least 2 minutes before moving them to a drying rack where they must air dry, they can not be dried with a towel because of the small possibility some germ or bacteria could be on the towel. This should be remedied soon with the installation of a dishwasher. I can not wait!

We have to remember to give JP his medications twice a day. He has six different kinds, three of which he takes daily, one he takes as needed for pain and the other two are twice a day two days a week. I have to follow a calendar to remember I'm doing it all right. Speaking of medications, I'm so grateful for Josh's job and the insurance. The prescriptions for our first 30 days cost almost $1,100 but we only paid $30 in co-pays. Seriously, what a huge blessing!

For 48 hours after JP's chemo treatments, we have to wear gloves when we change a diaper. This is because the chemotherapy comes out of his body in the form of radiation through his bodily fluids. If he sweats, vomits or pees on anything we have to wash it alone on the hottest setting twice before putting it in the dryer.

To be fair, we weren't "dirty" people before, but we were slightly cluttered and a lot less paranoid. This keeping-things-really-clean-all-of-the-time thing is nice. I have to stop and think a lot more than I used to have to and I am pretty sure in 3 years when this is all over we will still sanitize everything because it will have become such a huge part of our lives.

Cancer Sucks

Written Sunday, March 11th:

I'm in a group on Facebook called Utah Moms with Cancer Fighting Cuties. It's a board with almost 200 Utah parents that can relate because they've all either been there or are there right now. It's been nice to read their posts and share some feelings.

Today, however, I wish I wasn't part of the group. I wish my son didn't have cancer. I wish no kids had cancer for that matter. I wish none of us parents needed this group. One of the little cancer fighting cuties lost his battle last night. He had beaten his cancer in September 2010, relapsed in November 2011 and was admitted to PCMC last week in preparation for a bone marrow transplant. His baby sister was a match and they were going to do the transplant tomorrow morning. He had AML Leukemia (the "bad" kind) and through the intense chemotherapy, his heart was weakened. Getting ready for this transplant his little heart couldn't take it anymore and gave out. I'm so heartbroken for his family. They were so close to the end of their second battle at this. Cancer really sucks. I'd like to pretend my son and other sweet kids don't have to fight it because then I would never have to face the reality that cancer is a terrible, awful, evil disease that could very well could take my son's life.

The bright spot in the wake of this heartbreaking news is that as I was crying about it I was sitting on the couch next to JP. He looked up at me, linked his fingers in mine and said, "I'm sorry!" I laughed and said, "It's ok, sweetheart." He smiled and said, "I make you happy!" which made me cry even more because he truly does make me so happy. In the midst of all the awful things we're going through together, he's the one constantly putting a smile on our faces cheering us up. He's incredible.

Day 15

Written Friday, March 9th:

Day 15 of treatment was much less involved. JP did not have to go in fasting - thank goodness - and he was at least a little bit friendly with the nurses. His numbers didn't change much: Platelets at 20,000 and ANC still 0.1. He did another round of the chemotherapy called Vincristine and we think the steroids are finally kicking in. He's started gaining weight! Between the Wednesday visit and the Friday visit, JP gained a pound and a half! He's got a serious appetite for cheeseburgers and fries. He's also started associating a visit to Primary Children's with a cheeseburger and he did not appreciate that our clinic on Friday was not long enough for him to be able to order one. Every time a nurse would walk in and ask if there was anything we needed, JP would put his hand on his forehead, act exasperated, and whine, "Mine cheeseburger!" Of course we made him one as soon as we got home and he was thrilled. He's still pretty big on rolls and fries (yep, even in the middle of the night) and has even started asking for some of his go-to foods again. Friday morning for breakfast he ate mac & cheese. What a weird craving to have first thing in the morning! We're happy to oblige most of the time and we love that his cheeks are rounding out and you can't see the outline of his ribs anymore. Our boy is getting some serious caloric intake!

Josh told him that he could ask for basically anything at this point and we won't tell him no. It's semi-true, how could we say no to our son who has leukemia for goodness sakes? That would just be bad parenting. As long as we're catering to his every desire he's a pretty happy camper. The truth is that he is relatively happy most of the time. When he doesn't get what he wants in the instant that he wants it, however, the anger steps in and he becomes unreasonable. "NO!" is by far the word most frequently used by JP, but I'm not sure how much of that is him being on steroids vs. him being a two-year old. I think the frequency in that he uses it is the two year old part of him and the gusto with which he yells it is coming from the meds. Who knows.

Here are some cute pictures from our week:

Elsie met Dr. Gemmell for the first time since she caught her during delivery...

Elsie and Josh enjoying some snuggle time

JP loungin' out... Notice one sock on and one sock off? He gets it from Josh and it makes me crazy. It's adorable, but maddening.

Me and my cute kids

JP sure loves our Elsie girl!

JP was super happy to be done with chemo!

And today we broke into the church to play some basketball. JP was a big fan of the idea, not so much of actually carrying-out-the-plan.

Nosebleed

Written Wednesday, March 7th:

Did you know a nosebleed will send you to Primary Children's Hospital? I didn't either, until JP had one that only lasted just 15 minutes today.

At 8:00 this morning JP was sleeping next to me in my bed (he occasionally crawls in around 5:00 or 6:00) and he puts his hand on my face and whispers, "Mommy! Mine buggars!" I look at his nose, don't see anything, and use my shirt to "wipe" his nose so he'll feel better. I pretend to go back to sleep. A couple minutes later he says, "Mommy! Mine buggars!" I, again, don't see anything but decide to get out of bed and grab some Kleenex in case he didn't believe my shirt was good enough. When I get back to the bed, I notice it's not a runny nose, it's bleeding. My heart sinks. Normally a bloody nose wouldn't alarm me - Josh frequently gets them so I used to think nothing of them and JP had four nosebleeds in two weeks leading up to his diagnosis - but knowing JP's platelet levels are extremely low I knew his blood isn't able to clot itself to stop the bleeding. I immediately call Josh and ask if he thinks we should call the doctor. He decides to come home from work. I think that's a little silly, I think I can stop a nosebleed, but whatever. After trying nicely to get JP to let me pinch his nose for 5 minutes, I literally had to hold him down so I could pinch his nose for the next 10 minutes. Enter the roid rage. Oh boy, was it ever! Screaming, kicking, hitting, you name it. I've never seen him so mad. I try to explain to him that it will not stop unless he calms down and lets me, but let's face it, he's two. It's hard to understand why Mommy won't let you breath out of your nose and why the heck is it bleeding. I tried counting out loud because JP really likes counting and I thought maybe he'd join in, but once I reached a million he was still yelling at me. Sigh. It did finally stop and he did finally calm down and we spent the next 20 minutes sitting in silence hugging each other while I rocked him. I know it's the medication that's making him so crazy and I was very content to just hold him close so he knew I really was just trying to help. Once Josh was home the doctor called back and told us to come in, they wanted to check his levels and do another platelet transfusion. Thank goodness he decided to come home so I had some help quickly getting everybody ready to get to the hospital.

We spent almost 4 hours being checked and receiving the transfusion. His platelet level was at 20,000 (remember that normal is 150,000) which was actually up from the 13,000 it was last Friday but it's still extremely low. While we were having the transfusion, Dr. Staddon stopped by to give us some bad news. JP's blood smear was still showing leukemia cells. Apparently that is abnormal for the stage we're at in induction so he thinks we'll be at least 2-4 weeks longer before moving into remission than originally planned. Not great news, but he still thinks we'll see remission relatively soon. I'd love to be in remission on Day 29 but it looks like it will be more like Day 43 or later. The craziest part about this cancer is that JP will technically be in remission for about 3 years of treatment. Once a week/once every 10 days for at least 3 years we will be doing chemotherapy on a boy that no longer has evidence of leukemia cells in his blood. It takes that long to make sure we get them all. It only takes one tiny cell to go wacko so we need to make sure we get everything. I still feel unbelievably grateful it is the type of cancer it is. This is one small bump in the road, I expect there to be many along this journey, but we still feel calm about the process.

I find myself discounting how serious the situation is sometimes. When JP was in the hospital, Josh and I were coming back up to his room after getting something to eat. We shared the elevator ride with a visibly distraught man. When he got off on his floor, he grabbed the closest nurse and said, "Which way to the NICU? My son was just brought in on Life Flight. Please!" I choked up and couldn't hold back tears thinking how this father must be feeling - terrified, lost, and unsure about the health of his son. I looked at Josh, told him how heartbreaking that is and then he helped me remember that our son is fighting cancer. Oh yeah. Then today I shared an elevator ride with another patient's mother. We were both going to the 4th floor so the odds were 50-50 that she also had a kid in the ICS (immuno compromised unit). I asked how her child was doing, she said she had a 13 month old with RSV. I told her, "Wow, that is scary! I hope she gets better soon!" She said, "Yeah it is, what's your child have?" I paused and said, "Leukemia..." and let the word sort of just trail off, realizing how stupid I must sound. She looked at me and said, "That's much worse..." I didn't know what to say. I couldn't tell her that I don't think it is - I know he's going to be okay. My thoughts were that if her daughter was sick enough with RSV to be admitted to Primary Children's Hospital, it must be pretty bad. I sometimes just forget how sick JP is because he acts so normal most of the time. Maybe I'm still in denial. I don't think I am - I actually think I'm so far into the acceptance stage because I know he's going to beat this. I just don't know how long it's going to take.

Midnight Munchies

Written Tuesday, March 6th:

I thought I should post about JP's munchies. I guess he has an appetite now, but unfortunately it's not for good, solid food. He asks for Cheetohs, Doritos (pronounced "ree-toes"), Goldfish (pronounced "fishes" with an accompanying fishy face), french fries (pronounced "mine fwies and catch-up"), rolls, Fruit Loops, Lighning McQueen fruit snacks and chocolate milk. Where the heck is his desire for chicken nuggets and pizza? They used to be his go-to foods and now he thinks of them the same way he thinks of vegetables... POISON!

The doctors warned us he might wake up in the middle of the night hungry and he started last week with the Cheetos and chocolate milk incident, but he really made it middle of the night Saturday night. I was sleeping soundly at 4 am when I heard JP calling my name. I got up, went to his room and he cried telling me how badly he wanted "mine fwies and catch-up." I thought he might not be serious and I might be able to trick him by offering fruit snacks and a Capri-Sun. He happily ate the fruit snacks and downed the juice then handed me the wrappers while saying, "Where mine fwies?" I laughed a little and told him I'd be back in 20 minutes because they are frozen. He giggles and says, "Ok, Mom. Mine fwies! Tenty minutes!" I get to the kitchen, turn on the oven and throw some fries in. I laid back in bed while they baked and when they were all done, JP was back to sleep. Of course he was. I put them in the fridge and at 8 am Josh was warming up fries for breakfast.

What a silly, silly boy.

Day 8

Written Friday, March 2nd:

Today is Day 8 of JP's leukemia treatment. A week ago today was easily the worst day of our lives. It's still hard to believe this is really happening. I feel like I'm finally coming out of the fog and able to be aware of what's going on. It was really weird, those first few days felt like I was sitting in the room talking with the doctors but instead of actually physically sitting there I felt like I was more observing it all - like standing in the corner watching myself interact with the doctors but unable to respond because I couldn't fully understand everything. Thank goodness for Josh and his ability to retain important information and desire to learn everything he can about this cancer or I might be completely lost today.

This morning we went in for our first day of "clinic." It's basically like going to the doctor's office but it's in the oncology department of Primary Children's. They checked his vitals, drew some blood for lab work and set us up for him to receive more platelets. Once he was done receiving the platelets, they administered the chemotherapy and sent us downstairs to what they call RTU - the Rapid Treatment Unit. He wasn't allowed to eat anything this morning because they needed to do the lumbar puncture again. He was not happy about that. It's hard to be 2 years old and told you can't eat your favorite cereal for breakfast. Finally he was put under some anesthesia and had a lumbar puncture to make sure no leukemia cells were in his spinal cord again. Once he was waking up from the anesthesia he said, "Mine chocolate milk!" We had told him as soon as the doctors were done he could have something to eat and he decided that meant chocolate milk - now! He also requested some Cheetos - breakfast of champions if you ask me. I love that he loves chocolate milk just like his daddy and he loves Cheetos just like his mommy.

All you need is a dad and your iPad to be happy about your cancer treatments!

We're still waiting for the steroids to kick in. He does seem a little more quick to get upset over something, but it doesn't seem like anger yet. He has started hitting when he doesn't want to do something, but even then it's a soft tap on my shoulder and not necessarily an actual hit. He has started telling us foods he wants to eat but when we put it in front of him he still acts as picky as he always has. One thing he will almost always eat is a bowl of Fruit Loops. We've started giving it to him with Half & Half instead of whole milk because we are practicing what the dietician calls "Power Packing." Basically, if we can find a way to add extra calories to the foods he will eat, we do it. Like adding extra butter to anything and making sure he has a dessert option. We have a bipolar fridge full of fresh produce and lean meats on one side and full of processed, greasy and fat filled foods on the other side. Josh was at the grocery store the other night staring at the selection of tubs of butter when an older lady commented that it's hard to choose one, to which he replied, "Yeah, I'm trying to find the most fattening one." She looked at him strange and walked away.

Since the hospital stay JP's meals have consisted of Goldfish, Cheetos, mac & cheese, pizza, lots of chocolate milk, juice and Fruit Loops. We convinced him to have a bite of chocolate cake tonight. I never thought I'd have to convince my child to eat dessert, it's a weird problem to have! The doctors told us that if he wants pizza for every meal we should give him pizza for every meal. The other night we had put him to bed and he woke up a little later crying for Cheetos and chocolate milk. Let's just say we were up until almost midnight eating Cheetos and chocolate milk. Fine by me! We've also been sleeping until 10:00 each morning. We've all been seriously sleep deprived so it's been nice. This afternoon after we all got some lunch in our bellies, I laid Elsie down in her chair, Josh tucked JP in for a nap and we laid down hoping for a little nap before dinner. 2 hours later JP woke us up. I honestly can't think of the last time our household was quiet for almost 2 straight hours. I'm so grateful for a 2 month old baby that is going through a growth spurt and willing to sleep basically the day away. It felt so nice to have a real nap.

Thanks for checking in on us. We continue to feel overwhelmed with the love we've felt from so many people that care so much about us. We love you all.

Coming Home

Written Tuesday, February 28th:

We are home! JP had his third chemotherapy treatment this morning and didn't have a bad reaction so they let us go. We are very tired but so grateful to be sleeping in our own beds tonight under the same roof. We met with Home Health and Josh administered the first dose of IV antibiotics. JP has lots of medications but we have a calendar to help us keep track of when what meds he needs to take every day.

I've been physically sick all day thinking about coming home - you know, taking him outside of his hospital room where he could catch anything that would land him right back there again, being responsible for his IV antibiotics, keeping track of all the meds and when he needs them, and of course the unknown of what the next few years will be like. The steroids he is on are supposed to make him super hungry but also very angry. I'm so scared for my sweet boy to have roid rage. I will just have to remind myself it is the medication, not my son. I'm scared for the possibility of him getting sick. He will get sick at some point and I'm scared it will be because I forgot to sanitize my hands or somehow I'm the one that got a cold and gave it to him. I know this is a very curable type of cancer but it does not change the fact that we have a 3 year uphill battle until that point. And I'm scared.

Here JP and Josh are with our favorite nurse Kathy. She's from Boston and has a wicked cool accent. Plus, she loved the crap out of our kid so we had to love her for that.

This is Dr. Staddon, JP's hematologist. We will be working closely with him for the next few years and JP thinks he's pretty cool.

Another fun nurse Sara. She was so cute and couldn't get over his cute dimples.

JP was so excited to ride in the wagon to leave his room and come home. He refused to wear a mask so we suggested he hold his hand over his mouth. The silly boy did not move his hand from his mouth until we got into the car.

Once we were home, JP found this huge basket the YW had left for us. It was full of amazing toys, books, treats and even some money for his parents. We are so blessed to live in such a great ward with so many amazing friends.

Here Josh is giving JP his medicine through his IV. I am so grateful Josh is handling this all so well while I'm struggling. He really is amazing with it all and JP just acts like nothing is different. I can't believe this little man has cancer. You'd never know it just by looking at him.

We'll post more later. We are all so exhausted and hoping to catch up on our rest over the next few days.