JP's walk info

JP's walk is just over a month away! We are so excited to see some (hopefully most!) of you on Saturday, September 29th at Sugarhouse Park - 1300 East and 2100 South in Salt Lake City, Utah. You will need to arrive at 8:00 am. The walk and ceremony start at 9:00 am, but if you arrive at 9:00 you will not have time to check-in, receive your bandanna and t-shirt, etc.

100% of every donation made to JP's team will be put directly into pediatric cancer research through the Children's Oncology Group, a group that JP himself is on a few studies with. Your help is needed - every day 36 children are diagnosed with cancer and 7 of them will lose their battle. Please help us find the cures these kids need!

You should register online ASAP if you have not already done so - it is $10 per person for ages 16+ and FREE for ages 15 & under. You can go HERE to register for JP's team. It is important for you to register prior to the day of the walk so we know how many to expect. If you can not be there in person but still want to donate to JP's team, you can also do that on his team page.

If you are attending the walk and would like to make an additional donation to JP's efforts by purchasing a t-shirt, they cost $10 that you will pay that in cash (or paypal to joshnmegan03@hotmail.com) prior to or on the day of the race to Josh or myself. We will also have orange wristbands that are 2 for $5 and can be picked up the day of the walk. We have set up a Google doc where you can enter your shirt information - please do that by THIS FRIDAY AUGUST 31st! You can find that HERE.

We feel so blessed to have such an outpouring of support for JP in his fight against Acute Lymphoblastic Leukemia. Thank you for joining in our efforts to benefit pediatric cancer research! Please pass this email along to those you know that may be interested in joining us.

Update

So we've been doing IV antibiotics with JP every 8 hours for the last 10 days and blood draws every Monday, Wednesday and Friday to see where his ANC is. He was supposed to be on the antibiotics until his ANC reached 500. Yesterday he got to 400 and Dr. Lemons said his other numbers were going up enough that he felt comfortable stopping the antibiotics. We were able to deaccess JP and he wasn't thrilled with Mom & Dad yanking a needle out of his chest, but I think he's happy not to have that thing in the way anymore. Now we just wait for more blood work on Thursday to see if we can start the new phase of treatment. His ANC needs to be at least 750 for that, so it's not likely that we'll start this week, but you never know.

His white blood cells, red blood cells, hematocrit and hemoglobin levels are still really low. He's been borderline for a blood transfusion for almost a week now, but he's been acting so normal that we've been holding off. If he starts acting extra tired and isn't as active we'll take him in for some new blood.

He's been throwing major tantrums, especially at bedtime, and ever since a couple nights before he was admitted he's insisted on sleeping in my bed. Let's just say none of us are sleeping well. Well, JP is sleeping soundly but Josh and I are not. That's the problem with a 1 1/2 bedroom apartment - if he starts into one of his tantrums, he'll wake up Elsie and then I'll have two upset kids that aren't sleeping... At some point I'd love to have my bed back! Last night by some miracle Josh got JP to go to sleep in his bed and sometime between midnight and 2 am he crawled into my bed. I had hope but that didn't last long. I have a theory that he can't sleep in a hot room (who can?) and since the kids only have fans and our room has AC I wonder if that's part of the problem. I really have no idea but we've got to nip this in the bud and fast!

Accessed

JP's port has been "accessed" since he was admitted last Friday. That means that there is a needle in his chest (just like an IV but more permanent) so we can administer medications and draw blood as necessary. The port is a wonderful thing - it's so easy to access and with the help of his numbing cream he never feels a poke.

The plan for now is that he's on antibiotics through his port every 8 hours and has blood drawn every other day until his ANC reaches at least 500. It was 400 on Monday so we thought today he might get to be de-accessed and the medications round the clock might stop. Nope - he dropped to 100! That worries me because it makes me think he might be getting sick and his little body is trying to fight it as best he can... 100 is low. I get nervous whenever he's below 500. When I spoke to the doctor they were asking how he was acting and were hinting at maybe wanting him to come in for a check-up and some transfusions. We decided to wait and see where his levels are on Friday and will probably be heading in at least for some blood. That also makes me nervous because we wonder if his last blood transfusion may have caused his fever that admitted him. We still don't know what caused it. They said his urine might be showing something but it wasn't conclusive. Who knows.

We decided to go ahead with the pictures we had lined up for tonight, even though his numbers are low, because we knew we would be outside and not near people. Poor JP has been locked up in our house for going on seven weeks now. That's hard for an almost-3-year-old that loves to play sports and be active. We just haven't dared take him anywhere that he might get sick. You never know what kind of germs are out there.

Anyway, he was sleepy when we first got there but warmed up pretty fast once he saw we were surrounded by trains. He had to try opening each door and look in all the windows. He was happy to show off his port as long as it meant he got to stay on the trains. He is our cute little Utes and Braves fan, and if you didn't see his bald head or port in his chest you'd never think this litte guy has cancer. I had this idea behind him wearing his Braves jersey... I thought if you could see the port through his Braves shirt it would be a two-fold message. One: that he's a Braves fan and two: that he is literally so brave. We love our little man and are so glad he's ours.

Now it's time for bed since we have another dose to administer bright and early!

 

Admitted

On Friday morning JP woke up and he felt warm to me so we took a temp of 99. That's kind of high for him so I sort of knew what was coming. He usually hovers around 96-97 degrees so a 99 is definitely higher. A cancer kid doesn't have the immune system to fight any infections in his body so any illness will always manifest itself with a fever. If he gets a fever of 100.4 that stays for an hour or if it ever hits 101 we are supposed to go straight to the ER. He was acting especially cranky - yep, even more cranky than what the terrible two's give us - and was super emotional. We have been semi-prepared for a hospital stay because everyone warned us that Delayed Intensification is so hard to get through, but we had almost made it - Friday marked week six of the eight week plan - and ironically he literally had taken his last dose of chemo for this phase and we were technically supposed to be in "recovery" for the next two weeks with no medication aside from his normal antibiotics he takes on Mondays and Tuesdays.

We were checking his temperature every 10 minutes, who does that? I guess when you're a paranoid parent you do. When it started reading in the 100 range we decided to pack a couple things he would need and some things for Josh as well because he'd be the sleepover buddy. We knew very well that a neutropenic fever meant a 48-hour hospital stay so we figured if we went in we were going to be there for a while. Sure enough, his temp hit 100.5 and 100.8 and after arranging for a neighbor to take Elsie we were off to Primary Children's. By the time we got there his temp hit 102 and we knew we were just waiting on a room.

They took us upstairs and put us in room 4416. This is a special room - you have to walk in one door to this small room with some cupboards and then you walk through another door to get into the real hospital room. They said it's a negative-air thing (or something like that) where when you open the first door it sucks in air from the hallway into that first room and then when you open the hospital room door it sucks the air from the extra room into your room. Basically it makes sure that the air in the hospital room stays there instead of being able to get out into the hallway. These rooms are for the cancer kids with contagious diseases that could get the other cancer patients sick (or sick-er than what the cancer is already doing to them). We felt so special! It was just a precaution in case JP had something viral, which he doesn't.

They took some blood for cultures and did a nose swab on him. The blood takes at least 48 hours to show if something is growing and the nose swab tested for 9 things that they know are floating around the community - like colds, flus, etc. So far everything has come back negative which just means either it's something more or less serious than a cold. They did say they are waiting on urine cultures which may be showing something, but they were able to keep his fever down with some Tylenol and they got him going on some serious antibiotics so whatever was making him sick was being treated at least somewhat. Did you notice that I said they are testing his urine? That means they have some of his urine which means he had to pee into a cup for them which means that is exciting news because we've been potty training the little mister and we thought for sure this weekend in the hospital would put us back to square one but IT DIDN'T!

They discharged us (yay!) and now we get to do at-home IV antibiotics 3x each day (10 am, 6 pm & 2 am) and a CBC (complete blood count) on Mondays, Wednesdays and Fridays until his ANC (ability to fight infections) reaches at least 500. His ANC was 100 on Friday and 200 today, but that's not necessarily an indication that it will be 400 in a couple days. ANC's are funny little things. They go up and down based upon... nothingness. Nobody knows how to get it to increase, obviously illness will cause it to drop, but there is nothing we can do to "help" it get higher. We will just keep drawing blood until it is high enough to stop the antibiotics.

For now JP and Josh are both napping while I try to type this and keep Elsie quiet. She's usually a great napper so I thought we were golden when we came home but she had other plans... :)

 In the ER, feeling crappy

JP's special room

Trying to take a nap while Elsie wants to play...

Feeling better on Saturday

Aaaand our silly boy is back!

Poor Elsie had to nap in the corner

Did you pee in the potty?

 JP, want to go home?

Don't forget to stop by Spiderman... 

Mmmm... blood!

Today we spent 6 hours at the hospital getting blood transfused. I guess technically only about half that time was actually transfusing, but you know how hospital visits go. This dang phase has been rough and the mix of 4 terrible chemotherapies made JP's levels "crash." His white blood count was at a critically low level on Friday but there wasn't enough time for clinic to see us then and we didn't want to volunteer to be inpatient, so we chose to wait out the weekend and go in Monday morning instead. He was super mellow, took a nap in Josh's arms and woke up happy and cheerful. Amazing what a little blood can do.

JP loves his Hot Wheels and kept saying, "I want to take these to my cancer kids so their tummies won't hurt and they'll feel better like me!" We found a really great deal from Toys R Us (great as in 9-cents-per-car-great) and have about a million Hot Wheels cars that we can donate to Primary Children's... Ok, so that's an exaggeration, but we literally have a few hundred. He is such a sweet boy - he actually hasn't been feeling super so him saying that just makes me smile even more. He doesn't feel great but he recognizes that other kids he comes in contact with at the hospital are probably feeling a little bit worse. He started the day off by handing some out in the waiting room then we found the child life specialist and gave some to her to hand out where she saw the need - which ended up being right where all cancer kids start their clinic days. They weigh the kids, see how tall they are and take their blood pressure in this little corner of a hallway. They usually have a bucket of things to cheer kids up but they haven't had anything for a while. Before we even walked back to the infusion area to give out more she had filled a brand new basket with the cars JP brought in - he was so happy to see them sitting there and it made me want to do so much more! This hospital has given so much to us - I'm talking physically in the form of books and toys not just the fact that they are saving his life - and I am very much looking forward to paying that kindness forward with things that make JP happy. He is the reason we are there and receive small gifts from time to time and his favorite things in the world are cars and sports so giving cars just makes sense.

While JP was getting his blood I met a new mom in clinic. It always hurts my heart to see all the kids being treated and I know the emotions as a mother can not be ignored either. She is from Montana (a 7-hour drive to PCMC) and is staying at the Ronald McDonald house. They are pretty newly diagnosed, just about 5 weeks in, and she told me how isolated she's been feeling. I know how she feels - when your kid has cancer everything changes. You can't really take them everywhere you want to or play with all the friends you want to or go about your normal lives normally anymore. The focus is on keeping your child healthy and that often means staying behind closed doors away from as many germs as possible. We wash and sanitize our hands all. the. time. We shiver when we hear someone sneeze. We need to control the physical environment that we are in because the situation we didn't choose to be in is out of our control. And that usually means we hang out with our kid(s) at our home away from outside contact. It can absolutely be lonely, and I can't imagine being in another state away from my husband and living in just one small bedroom with my son. Sometimes this 500 sq. foot house doesn't seem so bad... Anyway, I was so happy we met. Even if our kids are facing different cancers, we're both mama bears trying to hold it all together when everything could so easily be falling apart. And we get each other.

Tonight while Elsie was keeping me up late I came across this picture of JP. This was about a month after he was diagnosed and when I saw it I laughed and cried at the same time. It blows me away how much cancer has changed my son over these last 6 months. Looking through pictures I feel like it should be several years I am looking through because his appearance has changed so drastically so many times. From the ravenous appetite he had while on steroids to having no appetite for anything - he has literally been on both ends of the weight spectrum. We are starting to worry about his growth. He is in the 2nd percentile for height and the 5th percentile for weight. Now, he's always been on the petite side of things, but at what point are we supposed to really worry? The average kid his age is 3 inches taller and weighs 5 more pounds than he does. The doctors told us they start discussing an NG tube when they are around the 5th percentile for weight... which he's been for months. It worries me that he might be underdeveloped and then he opens his mouth and starts talking and I think what he lacks in size is more than made up in his brain! The kid is ridiculously smart. I'm not sure where I'm going with this, but it's a thought that is constantly running through my head.

This post has already become longer than I intended it to be and I haven't even written everything I thought I was going to! More to come later, including pictures from our day. For now I need to go move JP from my bed to his (he climbed out of his bed 5 times tonight complaining of tummy pain and finally convinced Josh to let him snuggle) and see if I can find some sleep as well. This insomnia thing is exhausting!

Delayed Intensification - Day 29

On Thursday, JP had a CBC done to see if his levels were good enough for chemo. His ANC came back at 1100, plenty high to continue treatment. I was a little sad that he was able to continue treatment, he had been feeling so much better and was acting more like our JP and I knew as soon as we took him back for more he'd be right back to feeling crappy. On the other hand, I'm so ready to get through this awful phase so let's do this!

I got a phone call reminding us of our appointment and the girl had said, "Clinic is at 12:30 and your RTU appointment is at 12:30." I was confused - they can't be the same time - and since clinic is usually 2 hours before RTU I assumed she meant RTU was at 12:30 and clinic must have been 10:30. We arrived at clinic and (at 11:15) they tell us his appt wasn't until 12:30 which meant RTU wasn't until 2:30. Dang. The worst part about going to the RTU is that JP can't eat or drink anything prior to the appointment and that's hard for a 2 year old! They were pretty busy in clinic and couldn't squeeze us in so they asked us to come back at 12:30. I asked them to order up his chemo - he was receiving two new kinds through his IV and with just a 2 hour window before RTU I didn't want to have to come back up to clinic after his lumbar puncture, it was already turning out to be a long day ahead of us.

We decided with our one-hour window of opportunity we'd go to the zoo. Hogle Zoo has a new Rocky Shores exhibit and it's amazing! Seriously, go see it. The zoo got about a million times better when this opened. We had just enough time to walk down to Rocky Shores, wave to the sea otters, see the polar bear swimming and wave to the brown bears then we had to make the walk back to the car to get back to clinic. Good thing we have a pass so walking in and out isn't a big deal. :) I'm glad we were able to have a few happy, quiet moments with JP because the rest of our day turned out to be pretty awful.

We got to clinic and got our room pretty fast. I knew we had to move fast because he was supposed to get two new kinds of chemo and one was supposed to be a 30-60 minute IV push and the other was a 15-30 minute IV push. Thankfully we had Jessica as our nurse and she was all over it and got him going as soon as we got there. Usually we go back to the infusion area and then get hooked up, but she started him in the room while he was having his check up and then wheeled him over to infusion. That was pretty fun for him to go for a ride!

Here's one of the toxic chemicals we gave him - Cyclophosphamide. This was a one-time dose of this chemo. He received that and Ara-C through his IV before we went down to RTU for his lumbar puncture where they put Methotrexate into his spinal fluid. We came home with orders for HomeHealth to administer Ara-C through his IV every day for the next 3 days and they will come back and do another 4 days in a row at home starting Friday. That, and there is another oral chemo (Thioguanine) we are giving him every day for 2 weeks at home too. When I say we, I mean Josh. I can't go near the stuff since I'm still breastfeeding Elsie girl.

Waiting for the lumbar puncture, JP was so cute and silly. Love this boy.

The doctor came to talk to us after his lumbar puncture (while he was still sleeping) to tell us that the anesthesia didn't work all the way at first. I had gone back with him before the procedure and was asking him for kisses and he was giggling and yelling "NO!" while he tried to duck my kiss attacks then he returned the kiss attack and we were all laughing until he got the anesthesia. He laid back and I left the room. When the doc rolled him over to his side to do the lumbar puncture he started moving around and moaning. They gave him more anesthesia and began the procedure. Sometime during the spinal tap he threw up so they had to stick a suction tube down his throat to keep him from choking on his own vomit. When we got to go back and see him he was not happy. He was having a hard time waking up from the anesthesia and was crying about something hurting. We couldn't understand him because he was mumbling through his words - the anesthesia is hard to talk through - and he was getting more and more upset that we couldn't understand what he was trying to tell us. He wanted to be held first by me and then by his Daddy. He was all sorts of drooly and coughing like crazy. We finally figured out he was saying his mouth hurt - probably more accurately his throat since there was a suction tube shoved down there - and we got him some pain medication to help him calm down. That put him into a snuggled up sleep and they had to keep us for another hour to watch him since they gave more medication. When he finally woke up from that it was more of the same crying, saying his mouth hurt, etc. We decided we could handle it at home and gathered our things. It was 5:45 before we made it to the Crandall's to pick up Elsie. Longest day at the hospital by far.

Once we were home, he was still not happy but he asked for a salad. He's been craving Cafe Rio lately but his sights have shifted from the tortillas to their salads. Josh and I usually get one and share, but now there's a third party trying to eat our dinner! JP would say, "Mommy, I need more lettuce!" so I had to go get some lettuce from the fridge and chop it up so he had more to eat. What a weird craving to have - salad! Especially since he's burned through 3 Costco sized bags of Doritos and 6 bags of Lays BBQ chips in the last month...

I was thinking about how weird our "normal" lives are now. This is what JP's medicine looks like - it comes in a thick plastic bag with instructions on how to stay safe while having the medication in our home. There are caution stickers on a lot of his medicine and some can only be handled while wearing gloves. Who would have thought our home would have so many things that are hazardous and dangerous to most humans, yet ironically they are necessary in saving our son's life. 

 I just wanted to share a sweet moment we had on Friday night after all the madness of the day wore down. We knelt for family prayer just before JP was going to bed and after we said "Amen" Josh asked JP to give Mommy and Elsie hugs and kisses goodnight. He sat still on Josh's lap, shook his head and looked up at Josh and said, "No, Daddy, I want a blessing." Of course it brought me to tears, what almost-3-year-old asks his Daddy for a blessing? It made me realize that he pays attention to everything - he must remember Josh giving him several blessings and maybe he even felt peace or comfort after receiving one the last few months because we didn't ask if he wanted a blessing - he came up with the idea on his own. In our faith, we believe that worthy priesthood holders have the power to bless the sick and afflicted here on the Earth by the laying on of hands. These blessings are available to everyone and work by our faith in our Savior and Father in Heaven. I've been blessed to have a wonderful husband that honors his priesthood and can give blessings when called upon and I truly don't know how I would be getting through JP's cancer treatments without those blessings lifting me up. The power of the priesthood is real and I know our Heavenly Father knows us individually and wants us to call on Him for strength and guidance. Anyway, I was so impressed that our sweet boy recognizes the spirit and the healing powers a blessing can have.

It must have worked because JP woke up Saturday morning feeling pretty good and has been pretty happy since then. He is so cute - today while getting his chemo he decided his "guy" needed treatment too. We pulled out all the "medical supplies" and JP helped his guy get his medicine through his IV just like JP does. He used an alcohol prep pad to clean the clave just like the nurses do before hooking up his fluids and meds. Then he scrubbed the area clean, administered the medicine and got a gauze pad and bandaid when he was all done. He told me the other day he wants to be a doggy doctor when he grows up, and I have no doubts about it - I'm sure he will be a doctor someday.