***Note:
This post will read a little weird. I was stuck at the hospital with no internet connection….horror of all horrors! So, I continued to write my posts but had no way to actually post them. So here they are, in order by date, so you can read what happened while we were there.
By day 5 you start to get a little stir crazy….the things you do to keep yourself amused.
Wednesday, 3/14/07
There are times it definitely seems that we are trading off haywire moments. Although we do have the non-stress times, they get overshadowed by the instances when things are so pull-your-hair-out-and-scream-into-a-pillow.
God is good and He is most definitely in the details because we got the call yesterday afternoon that without a struggle and without a big battle scene, the warranty company sent out their investigator and they agreed to cover the cost of the engine replacement. I’d been so worried about the car situation until we got Peyton’s CBC result on Friday, and I was just ecstatic to realize how insignificant the car was in the grand scheme of things. That car could spontaneously combust right now, and it wouldn’t help our situation (it might get us that one step closer to the Extreme Home Makeover), but it would not be the end of the world. However, that all said, I am so thankful that God has taken this problem out of our hands and showing us his power in matters both great and small. And for this all the Mayhews say “Whooo hoooo!” We even danced a little.
Then, just as the car euphoria was wearing off, I realized that Peyton’s glee was less glee and more of a “crabby, I don’t like you, I don’t feel good, don’t touch me, don’t look at me, the world stinks” kind of mood thing. Hmmmm, interesting. So, I took her temp and it wasn’t anything to get too excited about, still under 100. But I could see the signs. She was irritable, obviously did not feel well and just aching for hospital room service. My diagnostics skills are strong because within an hour she had a doctor-calling fever. I called….they called back…I explained….they told us “72 hours!”…I said “oh joy”….it was a little more involved, but you get the gist. So here I am, back at good old All Children’s Hospital in St. Pete.
Of course, as soon as we entered the hospital, as per usual for Peyton’s neutropenic fevers (don’t you just love it when I bust out a really fancy cancer phrase like that?….I’m really hoping I spelled that right because oncology nurses read this site and my spell check keeps trying to change that to “Neutrogena”) her temperature was perfectly normal. In fact, it was a little low. That cracks me up! I feel like they’re giving me this look. I know they’re not. But I feel like it. The look says: “Mrs. Mayhew, a fever? Are you sure? Because she’s roughly the temperature of an ice cube and as far as we can see unless you set her under a heat lamp there’s no way she’ll ever get a fever again. Can you come talk to our special doctors about your need to bring your kid here for her non-existent fevers?” Unfortunately for Peyton, she was fine through the night, but as of this morning, her temp is starting to creep up again. So, HA!!
They accessed Peyton’s port after we got here, and then they have to get a separate blood sample for the culture. This really ticked her off, she’s used to getting all her Mr. Red out of her port. If you’re going to poke the kid, then do it once! But they have to get a separate sample of blood, in case there is a bacterial thing going on, they don’t want from the port site….not sure exactly why on that one, but that’s something to find out. Really ticked her off. She’s so sweet though. She cried and cried as they held her little arm down to do the poke in the back of her hand and I held her legs down. As soon as it was over, she looked up at the tech and said, “That really hurt, but I love your shirt, it’s pretty.” How’s that for making a tech feel guilty for holding down and sticking needles in my baby?
Thursday 3/15/07
We got moved from the 3rd floor of ACH to the second floor, good ole 2SW, which is what we consider Home Base for Peyton, the oncology wing. We lost our roommate from the night before, a 7 year old little girl named Savannah, diagnosed with ALL leukemia a month ago and also in for a fever. I spent a long time talking to her grandmother who had brought her in and we talked about the shock of the diagnosis and I felt like the old kid on the block, a 6 month veteran talking about our war wounds. But I shared what I could and offered help and support and encouragement in any way. I know that it helped to receive that when we were first diagnosed and hugs have been given each time I’ve seen Savannah’s grandma in the hallways today, just a reminder that although we’re virtual strangers, we’re all family in a very special way.
We got a new roommate, Amanda, a 12 year old t-cell lymphoma patient. She’s a dynamic little girl with a fantastic smile and amazing personality. Her mom Sharon and I talked for a long time and she told me that it was the first time that she’d had a chance to really sit down and have a conversation with another cancer parent. I felt really honored that she’d opened up with me and although I couldn’t do anything or really help her, I gave her understanding and prayer and let her know that God was on her side, each and every step of the way. They were such a great family and I know that they will remain in my thoughts and prayers.
Amanda’s family was so conscientious of Peyton and her needs. When Peyton napped in the afternoon they tiptoed around, the grandparents were so quiet and Amanda watched a movie with headphones and it was just so quiet all around. Peyton napped in perfect peace. Then Amanda dozed off for a nap and the Mayhew siblings descended upon the hospital for a visit like a bunch of screaming banshees. It was almost funny, and a little embarrassing. There’s a line in “The Sound of Music” when the dad says “we love how much noise you make telling each other to be quiet” and I know that has to be how they felt about us.
Peyton had a restless day. Not really sick, but not really right. She felt off, but nothing truly wrong with her. She didn’t eat anything all day, she didn’t want to do much, but she was bored. Poor kid. She wasn’t feverish for the majority of the day and just when I thought she’d make it through the day without a fever, it was bedtime and she heated up right up. I don’t know what it is about night time, but as soon as the sun goes down, her temp goes up. She’s so funny because it’s at night that she complains that her legs hurt, and it’s at night that I tell her she’s got a fever, so she tells the nurse this morning that she’s got a fever in her legs.
Friday 3/16/07
Today, was more fun. I figured out Peyton’s grand plan. Next week is Spring Break for the kids. Peyton’s on to it and she knows that the kid are going to be home all week and she wants some time away from it all, so this trip to the hospital is her little “Calgon take me away” moment. Now, if I could just figure out how she keeps on faking the fevers at night I could end this silly charade!
Today, Peyton and I got out of the room! I commandeered a wagon. Not just a wagon, but the Lexus of wagons….and we got it all decked out with a blanket and a pillow to make it super comfy and Peyton reclined in it and we went for a stroll through the hospital. She was having a ball. We talked and walked and just had a great time. We did have a moment when Mom kind of lost her cool however. Sometimes it comes out and it isn’t pretty and Mom regrets it and feels bad about it and just has to pray that next time, she learns to bite her tongue and give it up to God.
When we were walking in the hallways, most people were very sweet and Peyton was just chatty and cute and curious. We went all the way down to the ground floor of the hospital to where the gift shop and the entrance is and just made long loops around the hospital, to sightsee. Now Peyton is lounging on a pillow in a wagon with the biggest grin on her face, just loving life and we’re standing at the elevator and this woman (who was apparently having the worst day ever) actually frowns at her and says,” Well, shouldn’t we all just have a life like yours?” Seriously! In the nastiest tone I’ve ever heard. I just about came out of my skin. Here’s my kid, in a wagon…bald…in a pediatric hospital….in a gown, for the love of Joe! And this woman gets snotty? I looked at her and said “Yeah, she has a great life….if it weren’t for that whole cancer thing it would be perfect!”
Peyton still hasn’t eaten anything today and they had to put her on some IV fluids because she hasn’t been taking in enough fluids either. So where she had some mobility the past few days, she now stuck to an IV pole which is just a pain in the butt. She got chemo shots, double leg pokes that hurt really bad but are over quickly. She again did great with the temp all day and by 10 pm was starting to heat up and by 11 was running a nice solid fever. In fact, tonight her fever was high enough that we got some Tylenol because her head was achy and she was really feeling bad from it.
We’re scheduled to leave on Saturday, as her bacterial cultures came back negative and we should be cleared to go, but I have no idea whether we’ll be cleared to leave with her temperatures still up and down they way they are. I don’t know that they’ll let us leave if she’s still getting feverish in the evenings, especially if it appears that the fevers are increasing in intensity each night. Still no idea what’s causing the fevers. Ears, nose and throat all appear fine.
Angela Powell came for a visit tonight. That’s one of the cool things about our hospital stays, the Powells live about 5 minutes away and can come visit when schedules allow. Unfortunately, Adelaine can’t come if Peyton’s sick, so the girls can’t play, but the moms can visit, so that helps. She’s so much fun, we laugh and just giggle ourselves silly whenever we’re together. We talked about the fact that we’re planning to apply for our Make a Wish trip together and how much fun we’re going to have on that trip.
Speaking of trips. Because if this little glitch in our Matrix, there will be no Spring Break trip to Daytona Beach for the kids and myself. We just can’t take the chance that Peyton will get sick while we’re there and need hospital care. It stinks and we were so looking forward to the trip, but it’s the best thing for her and we’ll find other fun things to do here instead. I know that we’ll have a blast with our time regardless. I just hope we’re not doing it stuck in the hospital!
Honestly, I’m starting to worry that you might be reading this after Spring Break because I’ve posted this after I’ve gotten home from the hospital and Spring Break is over….which means Spring Break really wasn’t that much fun for us and I don’t want to hear about your trip to Cancun.
Saturday 3/17.07
We’re still here…no end in sight…it’s boring, but it could be a lot worse. We talked to Dr. Barbosa this morning and he basically told us flat out that as long as she was copping a fever that we were going nowhere. Again, she’s been good on the temperature all day, and as we ease into the evening I’m anticipating a hike in fever. If not, then I’ll hope to get discharged tomorrow.
The idea was brought up that if Peyton were to spike another fever tonight they may pull another blood sample to run a new culture and see if anything happens. It may be that whatever is going on with her is just not bacterial, it’s viral and there’s nothing to be done about it. It’ll just have to run its course in that case. In the meantime, they can’t release her, especially while she’s not eating or drinking, they don’t want her becoming dehydrated.
Today, Sharon came up and sat with Peyton while Rachael and I took a ride to Wal-mart. Even a little hospital break like that is good for the soul. We strolled around the store and bought a few small trinkets to keep Peyton’s spirits up, as well as Rachael’s, as she misses us a lot when we’re separated.
Sunday 3/18/07
Ok, so I was getting seriously frustrated with being here today. I’m over it and I know that the end is in sight, Peyton’s temp has remained nice and steady tonight with no spike at all and I think the doc will let us leave in the morning. Mind you, I haven’t packed the bags just yet. But we were both getting antsy to go and sort of getting on each other’s nerves. It’s hard for the two of us to be cooped up together in this little space for 5 days straight without going a little stir crazy.
The past couple of days our roommate has been Anna and her mom Tiffany. Anna is just a bundle of sweetness. She’s 16 months old and she has an extremely rare platelet disorder called Evans. Basically, her body creates antibodies that keep her marrow from making the blood that her body needs and it’s so very dangerous for her. She had to have a standard little finger poke, like Peyton has all the time and her finger bled for two days straight. It was a mess. She busted her lip and it was pooling blood nonstop in her mouth, and she’s a walking mass of bruises. This is a disorder that they can really only treat the symptoms and hope eventually they stop coming, it’s rare and there isn’t a whole lot known about it. The family is positive, but unsure of what the future holds for Anna
Anna is going through the steroid rage that our family is all too familiar with and she’s been the emotional monster I remember so well from Peyton’s meds. Tiffany is a single mom with a lot of family support behind her, but being a single parent is a phenomenally large job without a critically sick child. My heart just went out to her and her family who talked about what an amazing and loving mother she is and how proud they are of the job she’s doing, shouldering the responsibility of single parenthood to this little girl with such large needs.
Anna has given her mother a really hard time over the last couple of days, just acting out because of the steroids in her system. I remember the angry mood swings, the inability to make Peyton happy or to make her satisfied. It was so overwhelming to me to be dealing with the idea she was sick, then to be dealing with this huge change in her personality, so I really understood what Tiffany was feeling. I had tried to make myself helpful and available if an extra set of hands were needed or if she needed to know where something was. Anna is such a friendly little sweetie that she would let me hold her or play with her to distract her and when Nathaniel and Rachael were here she just loved to get down and play with them.
Tonight I was just fed up with being here, Peyton isn’t really sick, there’s nothing wrong with her. She can lay in bed and watch tv at home if that’s what she wants to do. She’d probably be up and running like a mad woman if she were at home, no fever in sight! I could be getting lots of stuff done that I know is just waiting for me, things are backing up and I’m getting myself more and more worked up. And then I hear Anna just freaking out, and I hear Tiffany crying and I realize that maybe we’re not here for Peyton….we’re here for Tiffany and Anna.
We’re been here for Savannah and Sharon (Amanda’s mom) and for Tiffany and Anna. Not that I have this swelled head, but we’ve had a chance to talk to people and reach out and offer comfort and be there for others when they needed it. Others have been here for us every day and this was our turn to be a shoulder to someone. God put us in this particular room on this particular weekend because He knew that Tiffany would need someone who would understand what she was going through and who could hold her baby and take her for a walk when she needed to cry. It wasn’t much, but as a mom who’s been there, a couple of moments to pull it back together when you feel it falling apart at the seams can be everything. I walked Anna through the hallways, rocked her to sleep in my arms and gave Tiffany some time to herself and I was thankful for the time that we were at the hospital. It gave me a special purpose this weekend.
I’m praying for each of these families, the ones like ours, the ones not like ours. All the ones in need, who are struggling in one way or another, it’s hard and it stinks. And I’m praying that they each turn to God to find the strength they need to get through each day. Because at the end of the day, He’s the one that makes you realize that there is a reason for it all, that there is a way to shine His love and glory from your little corner of the hospital.
This is Anna…the little spots on her face are petachei, a symptom of Evans…the huge bruise on her lip is from where she tripped and busted her mouth the night before, because she can't clot it bleeds and swells and bruises something fierce and can't heal properly…she's such a sweetie..I started calling her Anna Balboa by the end of our stay from all the bruises and blood she had.
After the storm had passed, Anna woke up in my arms and looked up and wanted her mama really bad. It was the moment that her mother needed. Tiffany knew that even though Anna was throwing slapping her, biting her and being generally ugly, she loved her more than anything and Anna knows that her mother is the center of her world. It’s not easy being a cancer parent, but these moments are precious and I got to be witness to Tiffany and Anna finding one. I don’t know if I’ll ever have the chance to talk to Tiffany after I leave the hospital (hopefully bright and early tomorrow morning) but I sure hope that I do, they are wonderful and I think I’ll be missing out if I don’t.
Monday 3/19/07
So, I’m finally posting from home! Yeah!! We got home around 4pm and we are so thankful to be here. The kids have already had a yelling match and I am just happy to be within a 50 foot radius of my own bed.
This morning we were awakened with the news that since Peyton didn’t spike any kind of fever in the night we were going to get discharged, but her hemoglobin came in low, so we had to wait for her to get an infusion of blood. That took a while and we finally got out of there around 3. We were both so excited to get out of there that we could hardly sit still!
Since we’ve been home Peyton has been roaming the backyard, just happy to be in the sun after 5 days trapped in the hospital. She’s glad to see the sun again and be allowed to roam without being stung to an IV pole. She’s all pink and perky from her transfusion and it’s awesome to see her feeling good.
We said goodbye to our new friends, Tiffany and Anna Allen with hopes to keep in touch and see each other soon. Anna will be starting some chemotherapy to try and beat the effects of her blood disorder. Please add her to your prayers, her little body will be going through many changes and fighting hard to cope with the effects of her disease and her treatments. She also needs extra prayers for safety as every little slip and fall is extremely dangerous. She has no ability to clot, so every time she cuts herself she could potentially bleed out and any injury is serious. She stole a little piece of my heart this week, it was impossible not to fall in love with her.
We are so thankful to God that Peyton’s trip to the hospital ended up being a virus and something that she was able to beat on her own. While long and boring, it wasn’t serious and her body did its job. Now we’re looking forward to a nice Spring Break vacation, getting some relaxing time at home and having some serious fun!
f.r.o.G….fully relying on God
—-Anissa
