No (bad) news please

How did another month go by between posts? Also, did you know Christmas is in a week? I feel like I'm always trying to catch up with everything - like my life is constantly running a few steps ahead of me and I can't ever catch up to it or slow it down. Sigh.

I love Christmas. I love that JP is so wrapped up in the magic of the season. We've seen Santa three times this year - first at jetBlue, second with Make A Wish on the Polar Express and third at our neighborhood Christmas breakfast. Each time he climbs up onto Santa's lap he quietly asks for "Star Wars Legos please." It is the cutest thing. He can be acting like a terrible toddler one minute and then I mention Santa and all of a sudden he's sweet as can be. He's usually sweet, but you know what I mean if you have/had a 3 year old. Two words: mood swings! Haha.

I can't even describe how stressed I feel. There's so much to do between now and Christmas, and there's also this cancer thing we have going on. Some days I feel completely fine and the only worries I have are trying to get everything done and other days I'm overwhelmed with so many different emotions. A few weeks ago I told Josh I think we need to "check out" for a while. By that I mean turn off the TV, not get on Facebook, not answer the phone, etc. and just hide out in our own little bubble where everything is fine. I've been feeling overwhelmed with sadness and difficult situations. A friend of mine lost her 21 month old little boy (not to cancer) right after Thanksgiving. I can't even express my sorrow for her - my heart aches so deeply I can't even find words. I am physically sick over it because it was completely out of the blue and I just can't imagine that kind of pain. I feel a lot of guilt for ever complaining/feeling bad for myself about our situation and JP's cancer because he is still here with me. I get to hold him, hug him and kiss him every single day. Even if this cancer does take his life, at least I still have some forewarning and have the different perspective to try and be more patient, loving and grateful. I don't even know if that makes sense, having guilt. But I feel it immensely.

And then there is the Newtown, CT shooting. I didn't dare turn on the TV or look at Facebook because as soon as I saw some news headlines briefly telling what happened I knew I couldn't handle details. I finally was able to read one article yesterday but not without tears. What kind of world are we raising our kids in? Again, feeling a lot of guilt that my son "just has cancer" but he's here with me. Those parents had no reason to believe that sending their children to school that day would be the last time they'd see them. I can. not. imagine. their sorrow. 

We also have 3 cancer friends who are currently relapsing which literally scares the hell out of me. How can I be so naive to think this is going to be fine and dandy, just like it has been going for the entire time? At some point it can't keep being the best case scenario for ALL. Or can it? I know they say bad things happen in 3's, but I feel like the last few weeks it's been some bad news every few days and my heart just keeps aching. 

JP is doing fine. There honestly is no reason for me to think otherwise. Yesterday he woke up with a cough, and I am pretty sure that's my fault. I've been fighting a cold for just over a week. I guess I'm surprised it took this long for him to catch it from me, but I'm also scared I made him sick and his body isn't going to be able to fight it. So far he seems fine, even though he had a low grade fever today (99.1). 

I just can't take any more bad news. Please feel free to text me happy things like people having babies or good Old Navy sales. I might just hibernate until all bad things are over.

Maintenance

This is not in chronological order, just so you know. I still need to write about our CureSearch walk, Interim Maintenance II days 31 and 41 and Disneyland. Be prepared to back track! These feelings are just so fresh and I can't stop thinking about it so I had to write it out.

After a wonderful few days in Disneyland, we had to come back to our reality and get back on track with our treatment of this ugly monster. We had blood drawn on Sunday, November 4th to see if JP was healthy enough to start Maintenance. You see, after you finish all the treatments in each phase there is typically about a 2 week recovery period where counts are usually pretty low but "recover" so you can start the next phase. In this instance, JP needed to have an ANC of 750. (Remember that normal people are usually 5,000.) So Sunday night we call the lab to find out where his ANC is because we had an 8:00 am appointment Monday morning. His ANC is 700. Hmmm... we weren't sure if we were supposed to show up in the morning or not! I called the on-call doctor and she went over his labs and told us there was no way - his ANC was actually 690-something. We decided we'd call in the morning to see what they wanted to do. Once we got ahold of clinic they told us we could recheck his counts or wait 4 days and recheck then. Well Josh's grandpa died on Nov. 1st so we were planning to fly to New York for the funeral on Thursday night and we did not want to leave JP right after he started a new phase so Josh and JP headed to the hospital hoping he made counts. His labs came back at 800 so I found a sitter for Elsie and went to the hospital.

Like I've mentioned before, we are participating in several studies to (hopefully) improve the treatment plans for ALL kids and the main study we are on randomizes patients in their Maintenance phase to see how they respond to treatment, whether higher doses of the medication improves the mortality rate or if lower doses can yield the same results, thus lessening the long term side effects of treatment. Many people don't realize that simply treating cancer can cause serious late-effects - infertility, heart problems, secondary cancers, disabilities, the list goes on. Our hope is that JP will beat this beast and go on to live a normal life. We realize there will likely be late-effects and we can only pray they do not interfere with his ability to live as normal of a life as possible.

Before I got to the hospital they randomized JP. In addition to all the medications he has to take daily and/or weekly, the arm of the study we were placed on involves the lowest dose of weekly oral chemotherapy and Vincristine through his port just once every 12 weeks. When I heard this, my eyes welled up with tears and I couldn't help but to shake with fear. How do we go from weekly/every 10 days of chemo to once every 12 weeks?? Sure, lower doses of the chemo should lessen the likelihood of late-effects but what if the leukemia comes back in between treatments?? Or, even worse, what if it's not enough chemo over the next 2.5 years to rid his body of every single leukemia cell and we end up right where we started, only 3 years later and no further ahead?? I am so terrified of relapse. I don't know if there will ever be a time that I won't worry about it. I sat down with one of his nurses and expressed my fear. She explained that we'll still have bloodwork and clinic visits every 4 weeks so we'd know if something was off. If there is any reason to believe it isn't enough, we would immediately take him off the study and increase the Methotrexate and/or adjust his treatment plan. That made me feel better but I'm still consumed with fear. Cancer is a terrible thing to have to deal with. I know we are incredibly blessed to have "the good cancer" and so many people praying for us and we know the Lord is carrying us through all of this, but sometimes I still feel so heavy with the burden of watching my son fight cancer. How is this fair?

Happy 3rd Birthday JP!

For JP's big day, we decided to celebrate it after the CureSearch walk. He technically turned 3 on Monday, September 24th, but we figured family and everyone would be in town for the walk on Saturday, September  29th, so we'd have the "real" party then. I can't believe my little man is already 3! He is the still the size of a 2-year-old, my very own pint sized boy! 

Some little facts about JP at age 3:

His favorite food is Cafe Rio salad with little chips and sauce (tomatillo dressing)

His favorite superhero is Spiderman

His favorite movie is Cars 2

He is in the 5th percentile for height and weight, or in the 50th percentile for 2-year olds (meaning he is the size and weight of your average 2 year old)

He says the funniest things to us every day (I asked JP what his shirt said (it says "let's roll") and he paused for a second before he exclaimed, "Hey wagon! Let's bounce!" or "I have a diagnosis - you have stuffed bellyosis!" or one day I took my hair down and JP ran his hands through it while saying, "Mom, your hair looks great!" He followed that by holding my face in his hands while saying, "Oh Mrs. Gibson!" with a big kiss on my cheek or "I want to tell you a secret!" so I lean over and he puts his hands around his mouth and whispers, "I'm so silly!" then covers his mouth and giggles. I could probably go on and on...)

He loves, loves, loves anything Utes related. Mostly Swoop.

He adores his baby sister but sometimes the chemo/steroids/cancer drugs get in the way of his better judgement and his sweet hugs turn into choke-holds and pats turn to hits. Maybe that's not a cancer thing and just a toddler thing?

Every morning when he wakes up he needs to know where his "cute baby," "sweetie," or "my baby" is. And the moment he sees her it's, "Hey Elsie girl! It's brother boy!"

He loves his Nurse Amanda, our home health nurse. She comes to draw his labs before chemo so we see her quite often. He calls her Nurse Amanda and himself Dr. JP and he will give us a full check up after she leaves - the same way she gives him check ups. 

He can count to a million (ok, slight exaggeration)

He is better at the iPad, PlayStation and Wii games than me - how is that possible? 

He loves to play NCAA football (PlayStation) with his daddy.

He has a huge heart and hates to see anyone sad. "Mommy, are you sad? *kiss* There, don't you feel better?" and "Let's take these cars to my cancer kids at the hospital so they can feel better like me!"

He is an amazing example of strength - without even realizing it. He has no idea how brave he is.

Moving on to the celebration part of him turning 3... We have a friend from when we lived in Cedar City who bakes amazing cakes for her friends. She sent me a message on Facebook and asked if she could make JP his birthday cake. Um, yeah! We all know I can't frost cakes to save my life so this was an amazing offer. I didn't realize just how amazing it was going to be until she delivered it and JP broke it basically immediately because he tried to pick it up to put it on thinking it was a real Utes football helmet! It really was incredible - I can't even imagine how long it took her. All I know is that every cake he will have for the rest of his life will never be as awesome. And that's ok.

We went to a park and had a small lunch and let JP run around playing with his cousins and a few friends. I remember sitting at a picnic table watching JP run around on the grass giggling and chasing/being chased by his friends/cousins/uncles and I had to keep blinking to clear the waterworks from my eyes so I could see it clearly. He was just SO HAPPY. I hate that cancer took our care-free summer of running and playing away from us. I hate that we couldn't even do "normal" summer activities (like playing at the park) because his numbers were too low to be around other people. I hate that all I see is germs wherever I go. That being said, JP's birthday could not have been more perfect and even if it was just for a day, we were able to pretend we were kinda normal. It was nice!



Just look at the joy on his face! 

He seriously loves Swoop. As in L-O-V-E-S Swoop.

Tearing into his gifts

Ever wonder where JP gets his silly personality?

Thank you to everyone that came to the walk and/or to JP's small birthday gathering. We are tremendously blessed to have such a large support system.

Aaaaand we're back! Almost.

I realize there has been a very long time between posts. I am so sorry! It seems like since JP turned 3 we've been so dang busy. A lot's been going on and I have a lot of thoughts and feelings that I've been holding in and if I don't type them out I'm pretty sure I'll forget about them. I am committing myself to writing one catch-up post a day until we're all there. I have to wait until naptime or bedtime but I promise I will be updating. See ya soon

jetBlue cares about JP

I was contacted by a lady in NY that works for jetBlue's Corporate office and she wanted to feature JP in a story about jetBlue's matching gift program. Of course I was so excited to tell her all about his walk so I sent her way more info than she needed! The story ran today and was emailed out to every employee - I have no idea how many that is, but I assume it's 10,000ish since we fly all over the US, Caribbean, and some of S. America. It makes my heart happy to think so many people could become aware of childhood cancer all because I asked jetBlue to match some money we raised.

I can't exactly post a link to the story since it's on our corporate site, but I copied it and am pasting it here. Hopefully it works.

From Blue to You: SSC walks to fight pediatric cancer

10/11 11:00am

For our From Blue to You matching gift program, Crewmember Megan Gibson rallied her fellow SSC Crewmembers to help support a cause that’s important to her: the CureSearch Walk for Children’s Cancer. Earlier this year, Megan’s young son, JP, was diagnosed with Acute Lymphoblastic Leukemia (ALL) and it came as a shock to the family, who went from shooting hoops together one night to the emergency room the next. You may know that there are no known causes for children’s cancer; neither genetics nor environmental factors have been linked to pediatric cancer, making prevention impossible in a time when 46 children are diagnosed with cancer in the U.S. each school day. In fact, it’s the leading cause of death by disease among children ages 1-14 years old.

 In honor of Childhood Cancer Awareness Month, Megan participated in the second annual CureSearch Walk in Salt Lake City. CureSearch for Children’s Cancer is a non-profit organization dedicated to supporting cancer research and spreading awareness about this disease. The foundation donates a large portion of their funds to the Children’s Oncology Group, the world’s largest organization devoted solely to pediatric cancer research, connecting thousands of leading experts in hospitals, universities, and cancer centers throughout the U.S., Canada, Europe, Australia, and New Zealand.

More than 3,000 people participated in the walk, raising nearly $164,000 in total, and our JetBlue team was part of this success. Megan created the event through Community Connection and then rallied 25 of her fellow reservations coworkers to sign up for the “All for JP none for ALL” group. Together, they raised $3,265 and JetBlue contributed $1,000 to support their cause. Of note, all of the generated funds are being donated to pediatric cancer research. According to Megan, this is actually rare in cancer fundraising, since most organizations typically allot only 1% for pediatric cancer research specifically.

You can check out the team’s page here—they are still accepting donations through October 13. Great job to SSC for supporting this important cause:

Kim Chavez	Jami Newbold	Karinna Waddoups
Carlee Coon	Sheay Nielson	Steve Wilson
Derek Dangerfield	Wade Okumura	Brenda Wilson
Roseario Fernandez	Whitney Pierce	Sommer Wilson
Vickie Flint	Jennifer Smith
Megan Gibson	Anne Smith
Geo Izurieta	Christine Swim
Grace Larsen	Cami Tribe
Tristin Lopez	Traci Valadez
Brandi McMillan	Tiffany Vigil

JetBlue will match your contributions

To have JetBlue help a cause you care about, sign up for an event and register online. You can read about the matching gift program criteria here, including the type of eligible events and matching requirements. We look forward to creating change around the areas that are important to you!

Happy 3rd Birthday JP!

Josh was leaving town for work the morning of JP's big day so we had a small family celebration Sunday night. We all know I am not great at cakes but I did my best and he was so happy it had a "U" that he requested that piece. It was a pretty big piece of cake for such a small kid, but he loved every last bit of it! Ok, so he mostly just licked the frosting off and then ate a little bit of cake, but still.

Just wait until you see his actual birthday cake - we have a friend from when we lived in Cedar City (she lives in Salt Lake now too) that offered to bake his birthday cake. Naturally I accepted because, who am I kidding, I can swirl frosting on a cupcake like nobody's business but frosting an actual cake takes way more talent that I will ever have. Stay tuned!

Interim Maintenance II - Day 21

I know you're all on the edges of your seats waiting for a new post from me... And I'm guessing this post isn't the one you're looking for, am I right? Well before I can post about the ridiculously amazing walk we had with CureSearch over the weekend, you are going to have to sit through yet another post about a day at the hospital.

Josh was out of town all last week which meant I was in charge all of the time. Okay, so I'm always in charge all of the time but sometimes Josh thinks he's in charge when he's home and since I'm so good at being in charge I let him think that. Haha! I really shouldn't post late at night. Anyway, JP had labs drawn and his ANC was at 1.3 which meant he was plenty healthy for increased chemo. I always have mixed feelings when he makes counts. On the one hand, SUPER! let's get this show on the road and get one more treatment behind us, but on the other hand I almost always know when he's going to make counts because he's acting so great and happy, almost like a normal kid without cancer, and I don't want to take him in because I know he's not going to feel as awesome anymore. He acts pretty great most of the time, but I can tell a difference between him feeling "fine" and him feeling "great" if that makes sense. Other cancer moms probably know what I mean. Anyway, Day 21 fell on a day when Josh was in Philadelphia and there was literally no way he could come to treatment with us. It was the first time it was just the two of us and I was nervous! Josh usually holds JP while he gets his port accessed and, well you know how my boys are, they are like two peas in a pod and Daddy can always make anything better so I was worried that it might be a rough day for JP to not have his best bud with him. I think I was also selfishly wondering if I would be ok without Josh - he is able to be logical for me while I go off and am emotional about things and if something wasn't right or the doctors needed to have a serious conversation with me I would have been a complete mess without him. Turns out none of the above happened and JP and I were able to make it through our day pulling silly faces at each other, painting on aluminum foil, playing with Cars cars and visiting Superman and Spiderman. Phew!

The only bummer is that on Friday morning JP threw up. For the first time, might I add, since starting this awful journey. This amazing kid acts like nothing abnormal goes on in his life and that chemo ain't no thang. He honestly has never thrown up until this treatment. He is truly an amazing kiddo and we are so blessed to call him ours.

 

 

Interim Maintenance II - Day 11

Monday we took JP in for more treatment. This phase has increasing doses of Methotrexate as long as JP can handle it. His ANC was 1600 on Monday (say whaaaaat??), I really can't think of the last time he was that high without steroids... Basically if his ANC is above 750 they will increase the dosage, if it's between 500 and 750 they will still administer the Methotrexate but only at the same dose he received last time and if it's below 500 they will hold chemo for 4 days and check again.

We got to the hospital at 10:30 Megan Standard Time (aka 10:50) so we were a little late. Oops. I always try to be on time but I just can't seem to do it! They still let JP have treatment despite his mother's tardiness, thank goodness. He was very happy to be there and even went with the Child Life Specialist to pick out toys. He's never done that - he's always just requested toys and let her bring them to him. He was showing off for his doctors and nurses and everyone was laughing. He told everyone how he watched his Utes and Giants win over the weekend and how we made Utes cupcakes (red velvet). I love that he has no idea how serious this cancer business can be, I wish we all had that luxury to be wrapped up in the innocence of childhood.

JP received the Vincristine chemo and the increased Methotrexate and they asked if we wanted him to have his flu shot. Yep, we sure did, but I got nervous about the actual shot... See when we go in, they access his port - which is kind of like an IV but in his chest - but we put this numbing cream on his skin so he doesn't feel the poke. He doesn't care about getting accessed and does it every week, but getting a flu shot is a different story - we couldn't just put it in through his port like usual. He sat there and watched the nurse clean his leg, pull out the needle and wasn't scared at all. Then she poked him - and he screeeeeeeeeeeamed. Oh boy, it was the saddest thing ever. I'm pretty sure he might now have a fear of needles like most everyone else. Dang. Secretly I'm hoping he's just scared of the nurse not the needles! ;)

Our social worker came in to chat - probably a direct result of me leaving a tear-filled voicemail for her - and we talked about finding a therapist through my work's employee assistance program and to focus on my breathing instead of letting my mind wander. She told me to talk to myself (don't I already do that? haha) about where my breath is instead of letting my mind get away with itself and the what-if's of cancer. She said that between 6 and 9 months after a child is diagnosed is when the mom usually reaches out for some help dealing with all the emotions that have been held in the whole time. I guess I'm pretty normal after all. I've said it before, but most days I can pretend JP doesn't have cancer because he acts so normal. I've just started noticing that I am more and more sensitive to cancer lately, and that could simply be that the last couple months have been harder treatment for JP. It doesn't help when a cancer friend with ALL was admitted to the hospital for a 2nd relapse (!) last week and passed away yesterday... I can't even imagine how her parents feel. Twice they thought they had won their battle but three times they were told their daughter had cancer. We have a 90% chance of beating this ugly disease and so did she (the first time). Ugh. Stupid cancer!

I finally listened to Taylor Swift's song in it's entirety today... Still cried but didn't have to turn it off, so that's good. Cancer still sucks.

Endless thoughts

I have a lot of time to think. Most of the time this occurs at night after Elsie has woken up to nurse and sometimes it's during the day when she's napping and JP is happy with a puzzle or his iPad. I've come to the conclusion that when I'm left alone with my thoughts it is not necessarily a good thing...

Tonight I'm sitting next to JP while everyone else is sleeping because he decided to take a nap at 7:00 tonight, woke up just before 10:00 and now I'm just waiting for the first hint of sleepyness to hit so I can get him in bed. I know, I should not have let him sleep but if you were here, you would have known that I tried not to let him - I covered him in my sheet and blanket (he hates being covered in blankets when he's sleeping). Then we let Ralphie snuggle on top of him and the blankets and nothing. He was out. Cold. Oh well, at least he is sitting next me (and my thoughts), holding my arm, and randomly telling me how much he loves me in the quiet darkness of our living room.

A lot of my thoughts come from a month ago when I was at my high school reunion. We were asked to have one person from each table come up and tell one thing we've learned about life since graduation... of course I was nominated (prior to my knowledge of what I was about to have to do) and all I said was something along the lines of make sure you have good friends and family because when bad things happen they are the ones that will hold you up - vaguely referring to our journey with JP's cancer, of course. I should have used it as an opportunity to let people know about pediatric cancer and how grossly underfunded childhood cancer research is even though it is the #1 disease killer of children, the fact that 1 in 330 children will develop cancer before the age of 19 AND that 1 in 5 of those will not survive... How is it that children are put first in our society in everything except cancer research?? It's maddening, we need to get past the idea of marketing the hope of a cure and just fund the research that will give us cures! Of course that would have been better to have said, but obviously this is a little tender and I can't even type this post without the screen getting blurry.

Anyway, I've come up with a lot of things I've learned since high school, almost all of which I have actually learned/realized in the last 6 months, not 10 years. Here's my thoughts, don't worry, it's not all of them, in no particular order:

#1: Hug your kids and tell them you love them. Every day. You never know when that opportunity may be taken from you. Make sure they know how much you love them, even if they drive you bonkers.

#2: When you have a random thought about a friend/neighbor/family member, act on it. Bake them cupcakes or call them or whatever. You may be an answer to their prayers, sometimes prayers they didn't know they were saying. I can't tell you how many times someone has knocked on my door with dinner or an offer to babysit at the exact moment I was in need. I have been so amazed at how in-tune those around me are and that has made me want to be better and help others even more.

#3: Stop gossiping, judging or making fun of other people. You don't know what load they have been asked to carry or why they say and do the things that they do. We all deal with the same things differently and your way isn't the only way. My way is. (haha, kidding of course!) Walking the halls at Primary Children's Hospital has changed my perspective on basically everything. I feel guilt, anxiety, tremendously blessed, and love all at the same time. It's hard to explain, but I've found that if I can stop talking about others and start looking at how I can serve them or help their situation be better, I feel better about my situation.

#4: Sleep as often as you can. Or stop sleeping so much so you can be productive. I'm not really sure what my stance on sleep is.

#5: Let people help you. As hard as it is, if someone offers to help you with something, you should probably just let them do it. Or offer up something else they can do instead, because they will keep asking until you do. This is very hard for me, I'm a very independent lady who likes to just take care of things myself because I already know how to do it right OR I don't even know what I need so I don't know what to tell people... I'm still working on this - just today I received an email from someone I haven't spoken to in roughly a decade and they offered to do anything they could to help us out. This is a tough one, besides prayers and a cure for cancer I don't really know what to say.

#6: Medical bills can bankrupt anyone. I didn't realize how blessed we are compared to some families dealing with cancer because we have good insurance that is paying 100% of JP's treatments at this point. We met our max out of pocket pretty fast and now we pay a $25 co-pay every time we go to the doctor's and a co-pay for all our prescriptions, but other than that the insurance pays it all. I am blown away with how big of a blessing that is - our insurance has paid over $80,000 so far and I know how stressful any portion of that could be on any marriage. Just one more reason I knew 3 years ago Josh needed to take the job here in Salt Lake, but I didn't know exactly why until now. One more reason to stay in-tune...

#7: I love Taylor Swift. She wrote a song, Ronan, about a little boy who lost his fight with cancer. It's from the perspective of his mother, and it really is so beautiful. I honestly haven't even heard the song in its entirety because about 20 seconds in I'm crying so hard I can't hear anything else. Anyway, I read through the lyrics and my heart just breaks because almost all of it could have been written by me, word for word, and that scares me. JP's prognosis is really great, but there is still that chance I could lose him. I do try not to focus on the teensy tiny negative possibilities but sitting up at night thoughts go through your mind and you can't believe you're thinking them but they've already been thought, you can't unthink them. Maybe that doesn't even make any sense... I am in the works to see a professional (don't judge me - remember?) because even though I honestly think I am handling things well and am having normal reactions to my son's cancer diagnosis, I still should probably talk it all out with someone who knows how to handle it, if it needs to be handled. Anyway, where I am going with this is here: watch the video if you can (http://youtu.be/1ITrd7fM6aY), or read the lyrics below. So beautiful.

Sidenote: I always tell JP I love him to the moon and back and the other day - not to be outdone - he said, "Mom, I love you to the moon and Finn McMissile and back!" and smiled so proudly because he knew I couldn't top that. :)

Ronan

I remember your bare feet down the hallway
I remember your little laugh
Race cars on the kitchen floor
Plastic dinosaurs, I love you to the moon and back

I remember your blue eyes looking into mine like we had our own secret club
I remember you dancing before bed time then jumping on me waking me up
I can still feel you hold my hand
Little man, from even that moment I knew
You fought it hard like an army guy
Remember I leaned in and whispered to you

Chorus:
Come on baby with me
We're gonna fly away from here
You were my best four years

I remember the drive home when the blind hope
Turned to crying and screaming, "Why?"
Flowers piled up in the worst way
No one knows what to say about a beautiful boy who died

And it's about to be Halloween
You could be anything you wanted if you were still here
I remember the last day when I kissed your face
I whispered in your ear

Come on baby with me
We're gonna fly away from here
Out of this curtained room in this hospital
We'll just disappear
Come on baby with me
We're gonna fly away from here
You were my best four years

What if I'm standing in your closet trying to talk to you?
What if I kept the hand me downs you won't grow into?
And what if I really thought some miracle would see us through?
But what if the miracle was even getting one moment with you

Come on baby with me
We're gonna fly away from here
Come on baby with me
We're gonna fly away from here
You were my best four years

I remember your bare feet down the hallway
I love you to the moon and back.

 

 

That's enough of my emotions for one night. Thanks for "listening."

Interim Maintenance II - Day 1

Sorry for the delay in posting and for not having any beautiful pictures to share. Turns out I've met my 1 GB max in free blogger space (yes - ONE GB) that Google allows so until I export my family blog I will just not be able to post pictures! Silly Google, just give me 2 GB for free! haha

Anyway, JP met counts on Monday, September 3rd so we went in to start phase 5 - Interim Maintenance II - on Thursday, September 6th. Day 1 consisted of Vincristine, 2/3 the highest dose of Methotrexate he tolerated in phase 3 through his port and more Methotrexate into his spinal fluid with a lumbar puncture. He did great - he woke up from his LP the happiest I think he ever has, which was a delightful surprise considering he had his hardest day last time he had an LP. We mentioned that we had Goldfish crackers and that we could go see Superman and he sat straight up. Yes, not only does Primary Children's have a Spiderman statue, but we also found Superman! He is much more muscular than Spiderman so JP was a little aprehensive, but still managed a smile for the picture.

We enjoyed a neighborhood bbq on Friday night and I woke up with a sore throat on Saturday morning. Of course I did! We've been so careful not going anywhere and have basically locked ourselves up in the house for 2 months - 500 square feet the entire summer - and we figured he was acting ok and had a 900 ANC on Monday so we tried it. So far he's ok, but I'm the mom taking care of him so I think it's only a matter of time before he gets my cold. I blame it on Elsie - she's had a runny nose for a few days (and isn't cutting teeth) so she must already be sneaking out at night to hang out with the cute boys down the street. It's the only logical explanation! JP did fever up to 100.2 on Saturday but never got higher so we're keeping our fingers crossed. And I'm constantly sanitizing my hands and not breathing near him. We'll see how things go the next few days. I did take some NyQuil last night and had a really hard time waking up... and I mean a really hard time! I wasn't making sense, I couldn't think straight, and I was mostly out until 11:15 this morning. I did, however, manage to get up with Elsie at 8:00 and put her back down for her nap at 9:30 but I don't think I was awake for most of that... Not sure if I'll be doing that again!

I will work on cleaning up my blog so we can post cute pictures soon. :)

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.