Five years ago, Jake entered our world and forever changed our lives. And although it’s only been five years, it’s sometimes hard to remember what our life was like before his arrival. One thing is for sure… there were definitely less toys laying around the house.
I enjoy playing with Jake, but I also enjoy watching him play. It reminds me of what it was like to be a child; the times spent playing with toy cars, or kicking the ball outside, blissfully unaware of the daily stress experienced by parents as they work to provide for their children. I watch him play and I sometimes find myself selfishly wishing he would stay a little boy; spending the rest of his days joyfully playing, completely innocent and unaware of life’s harsh realities.
The truth is he’s growing up, and we’re growing older. Today he’s 5, before we know it he’ll be 10, and soon thereafter he’ll enter the awkward teenage years where the grandparents are finally avenged. Yeah, I’m a bit worried about that.
For my part I plan to do what my father did with me and pass on the experiences he passed down to me, as well as the new ones I’ve obtained through my personal journey. As parents, I feel that’s one of the greatest gifts we can give our children.
Happy birthday Jacob! Mommy and Daddy love you!
| Jake under 1 year (2005) |
 |
| Jake at 1 year old (2006) |
 |
| Jake at 2 years old (2007) |
 |
| Jake at 3 years old (2008) |
 |
| Jake at 4 years old (2009) |
 |
This past Saturday we celebrated Jacob and Sophia’s birthdays (Sophia is Jake’s cousin). They’re birthdays are only one day apart and Jake is just a year older than Sophie, so this one was birthday #5 for Jake and #4 for Sophie.
Continuing with the themed birthday parties we’ve been doing for them, this year the theme was cowboy/cowgirl. The planning for this one goes back to October/November of last year. In fact, Jamie had purchased some western themed items, including a cowboy costume for Jake, prior to her leaving for Tampa. My nieces Amy and Alyssa (Amy is Sophie’s mom) really worked hard and frankly, outdid themselves with this one.
Jake had been counting down the days to this party and I heard some of the boys in his class were doing the same. They all had an absolute BLAST! We invited the boys from his class and Sophie invited the girls from hers. The weather was a little windy, but the sun was shining and the temperature was just right.
The girls had planned some fun activities for the kids with the potato sack race and gold rush being the most popular. Speaking of potato sack races… CHEATERS NEVER WIN! This is a lesson Jake learned when he ran instead of hop during the race. ….and it’s all captured on video for ever more. 
After the party, we took turns riding the strangest contraption. Apparently, one of my niece’s coworkers heard we were having a western themed party, and insisted we borrow the…, well for a lack of a better work, horse bike?? Just check out the photos below and you’ll see what I mean. It was an interesting ride and great fun. So much so, we were able to get the grandparents to take it for a spin.
Overall, a very enjoyable day. Many thanks to Amy, Alyssa, and the entire Borges clan for putting it together. Alyssa was kind enough to record the event with my video camera so Jamie wouldn’t miss out. You can find the 25 minute video from the party below.
It’s been a while coming, but here it is: Joshua’s first tooth! There are actually two bottom teeth working their way through, but one has finally poked out from his gums.
It’s been quite challenging to snap a photo of it and had become somewhat of a quest for me over the past week. I got close a few times, but he loves to hide it under his tongue.
One down, twenty 19 to go. Now where did I leave that infant Tylenol?
Since I haven’t posted since Wed., I thought I should do one even though there’s no much going on. Same old, same old – which is actually good. Thursday we went to the Brandon Towncenter Mall and out to lunch at the Cheesecake Factory. The mall was nice and clean, and the food was okay but the cheesecake I brought home and ate that night was amazing! Then that afternoon, I had my PT. They’re really working me out; I’m actually getting sore now, but that’s what we want so I’m using my muscles. On Friday, all I had at Moffitt were the standard labs and then we went to Wal-Mart, BJs and Blockbuster.
Mom and I are working on our third jigsaw puzzle. I tend to get on a roll and work for hours, not the best for my back, but I get determined. I’m working on my plastic canvas sewing every day; right now, I’m working on a box with some really difficult techniques I’ve never used before. It’s fun most of the time; I kinda like the challenge.
Today, Jacob and Sophia have their joint cowboy/girl themed birthday party. I wish I could be there, but I’ve been promised pictures. Instead, mom and I are going to the flea market with Andi and then out to lunch. I love that I can eat out some; I’m limited and have to be careful but it’s so nice to have more options.
Oh, here’s an odd side effect. My skin has turned brown in certain places – elbows, under arms, thighs. Then patches of my pale, white skin are slowly returning. It looks so weird. Then last night, a patch of skin just peeled off my stomach! I’m fine and all; it’s just something I didn’t experience this way before. I did peel like a snake for a while, but the browning is just not attractive; luckily, it’s not really visible to anyone else but me.
The boys come next weekend and I can’t wait. I’m hoping Joel and I can go out one night and we’ve talked about taking Jake to the MOSI science museum that’s nearby.
Well, sorry this isn’t too exciting. Thanks for continuing to think of us.
It’s Wednesday so that means I go see my transplant doctor. Looks like I’m doing well. The virus I had that started with a C and that 80% of people get is gone. My GVH also appears to be gone. My blood work is good. White cells are a little down because she’s weaning me off the steroids. Hemoglobin is good so no blood transfusions needed. Platelets are MUCH better; they’re over 100! I asked if I could floss now, and Dr. F said yes. I am thrilled; my teeth feel icky. I am so used to proper oral care that even after brushing my teeth, I can feel stuff between them. I am totally getting floss this week; I didn’t bring any because the book states that flossing is not allowed because it can cause bleeding and anything that can cause bleeding is bad.
I can also eat out in restaurants! I have rules. No fast food. It has to be a sit down place. Food must be thoroughly cooked, so I don’t plan to have a steak since it has to be well done and I’m no longer a fan a shoe leather. No salads. No places like buffets or places where they scoop food. The hardest thing will be no fountain drinks. In fact, I would warn everyone against fountain drinks. I’m not allowed to drink them because of the cleanliness of the tubes. Those tubes do not necessarily get cleaned enough and bacteria can build up causing problems for my immune system (or anyone else’s). When you think about it, dirty tubes are nasty. It’s the same with ice cream (no scooping) and soft serve (tubes), but Dr. F says it’s okay if they make the milkshake in front of you – fresh.
As for the Gleevac medication, I will be taking it again so hopefully I wont have issues. We pretty much learned what I could tolerate last time, and Dr. F really listened; plus, she has documentation from my oncologist back home showing my trouble with it the first time around. The purpose is just to make sure the ALL doesn’t return. I may not really need it; it’s just in case. I’m not part of a trial, but one is currently going on and she says the results will determine how long she keeps me on it. Next time, I’m going to ask when they might have those trial results.
Dr F was also super happy because my bone marrow results are all in and still show all zeros. She even circled them! She says I do not have any ALL. The zeros are important because she told us that at the end of the number series there are often a couple positive numbers, but mine are all zeros so there’s absolutely no signs of cancer.
I would say overall, it went really well. I’m definitely in a good mood and really looking forward to being able to eat out again. Mom and I are going to a mall tomorrow and now we won’t have to come home for lunch; we can eat there. Plus, I’ll get to try some new food. Whenever I get to do something “normal” I can’t help but get excited. The boys are coming Valentine’s Day weekend and it would be great to go out with them. We’re thinking of the MOSI science museum that’s nearby and Dr. F. said I can go to the movies (she brought it up; I didn’t even think to ask) and the PA told us about a place that has big leather chairs and waiters because you can eat dinner there. It’s not the cheapest, but sounds neat because he said you have tons of space and aren’t really next to anyone. It’s just nice to lose some of my limitations. It feels good and really allows me to exercise without feeling like I’m exercising. Becky, my PT most of time, told us Tuesday that walking is really the best thing I can do. We did cool things with some new machines, but walking works out a lot of what I need.
Oh, I almost forgot, there was one more thing the doctor told me. Even though she believes my GVH is gone, she warned me to watch for “flare ups” – diarrhea, vomiting, new aches, rash, fever or anything out of ordinary. I can’t do what most of us do anymore when we feel “off”; I have to call and although having GVH is fine and wanted, once I have it, we want to make it go away. There’s no way to know when and if I’ll have a flare up. It could be weeks, months, or even a year. She said that usually the first year has the most flare ups, but it is still possible during the 2 year or even 5 years in the future. The most probable time is the one year anniversary of my transplant. Again, I could have few; it all just depends of me because everyone’s different.
Now, I wait. I continue with my normal weekly schedule. They took me off of isolation, but I still have a little bit of a cough. No pain and I do feel good. It’s so nice to not be super sick anymore, and hopefully I won’t ever have to back there. It’s all time and waiting, but mom and I are keeping busy. I literally do find myself happy at times, but I’m always missing my boys and my family.
THANK YOU! THANK YOU! THANK YOU! to all my family and friends that are supporting my family and I through this difficult time. Your prayers and support have no doubt had a huge hand in carrying us through this.
Jamie is an extremely organized individual. She makes lists for just about anything we do. Going to the store? List. Going on a trip? That’s a list. Kid’s birthday party coming up? You betcha there’s going to be a list involved. So when the time came to start getting things ready for her stay over in Tampa, there were lists everywhere. Not surprising, there was one for me too and prior to leaving, I was handed a notebook.
No, the entire notebook wasn’t full of lists…. only the first three pages. Still it must have been awesome to see my face when she handed it to me.
Most of the list items dealt with Christmas and other minor odds and ends. However, item 12 on page 3 was one she STRESSED could not be overlooked. It reads:
Clip Josh/ Jake’s finger & toe nails at least once a week.
So every week I set some time aside to clip their nails. I mean, I literally put a weekly alert on my calendar to remind me to do this.
With the exception that I had totally neglected their toes and Jake had some gnarly toenails when we visited Jamie a few weeks ago, I had done what I felt was a fair job staying on top of their finger nails. Still, the toe nail incident had kind of placed me on notice. I certainly didn’t want her thinking I wasn’t taking proper care of our kids.
Then it happened.
I’m over at my mom’s house having dinner and Joshua goes into one of his notorious fits of rage during which time he manages to put a nice gouge across his right cheek and draw blood. I had trimmed his nails the evening before and had no idea how he managed to do it, yet there it was.
My mom had the typical parental response: “Oh no, he hurt himself. Poor little guy.” Me? I think my first thought was “Jamie is going to KILL me” and my first words were “why did YOU let him do that?” Is this kid trying to get me in trouble? Fortunately, after the initial shock passed, I realized the scratch would probably be gone by the time Jamie saw him again. I was probably in the clear.
No such luck.
The very next day I receive a text message from Jamie saying she wants to do a video call on Skype. Bear in mind that we haven’t “skyped” since she was in the hospital.
I am so dead.
So that evening I call her on Skype and we chat for a while. Jake gets his turn as well and eventually Jamie asks to see Joshua. I bring him over to the camera and sit him in my lap. Maybe the scratch wouldn’t be noticeable through the webcam? The picture quality from my en couldn’t be that good, could it?
I’m sure you’ve heard the saying “you get what you pay for?” Well, apparently I paid too much.
The first thing Jamie says: “Ouch! He scratched himself good.” I immediately respond with “I swear I just cut his nails two days ago and have no idea how he managed to do that!”
In what felt like an eternity, she paused, gave me that strange head cocked to one side – squinty eye look she does when she doesn’t quite believe something, and just said “ok”.
She knows I’m trying my best. I love you, Jamie!
I think when anyone goes through a situation like mine, you can’t help but re-examine your life and really consider what’s important. What I’ve realized is that I always knew, but denied myself a lot. Joel and I changed our lifestyle after my last cancer by trying harder to avoid stress and spending more quality time as a family, like going to the park or taking family trips. We also downplayed the importance of money in our lives which greatly reduced the number of heated arguments Joel and I used to have. However, as the years passed since my 2005 cancer, I think I was starting to allow myself to get wrapped up in work again and I know I was stressing more at home because I felt like I couldn’t get anything done – cooking, laundry, childcare, cleaning… So now, I’m trying to look at my current cancer as a blessing. It’s reminding me of the life lesson I really should have completely learned in 2005 and showing me what I need to do make myself happy and improve my family’s quality of life.
So what have I discovered so far? Family and God are the most important things in the world. All things are possible through the Lord and I need to devote more time to prayer and praise. Then family ties directly to that. I want to spend more quality time with my husband and little boys. I want to do crafts with Jake, as I’ve rediscovered my past love for plastic canvas sewing which is a lot like cross-stitching but with yarn. I’ve been working on Christmas ornaments and the hobby forces me to work with my hands, which is incredibly important for me to manipulate. I absolutely love it! I forgot how much I used to enjoy crafting. Mom and I have gone to a few craft stores and I just want to buy everything and do this activity and that activity. And then, I think about how fun it would be to do lots of these crafts with Jacob, and I’m looking forward to seeing if he’s interested when I return home. Joel has always been good about taking time for himself so he doesn’t go nuts and I never really allow myself the same – and you know what? I need to. Everyone should have an outlet that’s just for fun, for them. Some love to garden, some love to cook, and I used to love crafts and reading. For now, I’m going with crafts. I still have concentration issues, and have found magazines easier to handle than novels; plus, realistically I can do crafts in noise and buzz, but not reading.
Overall, I guess what I’m saying is that for most of us, our priorities are skewed and we just need to be aware. I believe my eyes are open now, and I have a feeling that more revelations are to come.
Tags: Jamie, Reflection
Something that really sucks about this is the amount of pills I have to take on a daily basis. I’m not someone who ever really took anything and I used to have huge problems with swallowing pill, so I’ve always hated them. Now, I have three pages worth of drugs I take that get altered each time I see my doctor. Mom puts my pills in one of those weekly AM/PM pill containers and I take a ton in the morning, a few in the afternoon, and a bunch in the evening. I time them when I eat because all that water with pills really upsets my tummy. Without food, I would so get sick. The problem is that I get to eat a few bites, take a pill, eat a few bites, take a pill – it’s rather hard to enjoy a meal. It probably doesn’t help that my taste buds are still off. It’s weird; a lot of things just taste odd. Of course, I’ve dealt with this kind of thing before. With my last cancer, I completely lost my sense of taste, but in a way that was easier because you just ate anything because you needed to. Now, I never know how something will taste and at times, it’s just gross. Plus, some of the pills taste nasty. I try to swallow them quickly but at times, they become stuck and start to melt – disgusting and I gag. Then, when a pill goes down the wrong way… ugh. Some are just so big… Overall, I prefer capsels; they seem to go down smoother; although I do have a couple that I think are just a little too big. I just have to get used to it, I guess. My understanding is that I’ll be on some of these pills for a LONG time – like years. Hopefully, it won’t be all of them.
As you may remember, the day after I left the BMT isolation ward of the hospital, I got sick with a horrible cough. Because I had the cough, they put me on isolation and I have to wear a mask. I’m still on isolation because the cough is nearly gone, but continues to linger some. The mask is the funniest thing because it literally looks like a duck bill. I think you just have to see it. I wear it quite a bit. It’s not the most comfortable thing, especially when it gets hot inside, but it’s not that bad. I also have to wear it in the store, which really doesn’t bother me. Sometimes people stare, but my safety is way more important. A few people have asked me about my mask – more about comfort than anything. The most amusing thing that has happened occurred when mom and I were walking around the University Mall and we passed this little kid. He pointed at me and laughed! I was so shocked, but it was cute because he wasn’t afraid of me; instead, I think he thought the duck-look was funny. So far, no one has been rude, but one of the women I know from my hospital time told mom that someone actually stopped her in a store and questioned her about what was wrong with her. I’m hoping that doesn’t happen to me but I’ll deal with it. In the meantime, I’m just going to continue looking like a duck.
An interesting side effect that I hadn’t experienced until my last few chemo treatments was chemical burning. While going through the initial chemo treatments back home, I had numbness in my thumbs, but never pain. This time, my thumbs literally burned. They turned red and hurt like heck. The doctors prescribed me this nasty oily ointment that gave me a little relief, but in the end, it was a drug – neurotin (sp?) that saved me. Mom’s familiar with it and it somehow stops the nerve pain. It took several days to work, but when it did – awesome. The burning extended from my thumbs and the skin on the top of my hands, especially my left hand, looked burnt. It was like I stuck my hands on a hot oven pan or in a pot a boiling water. Now, that’s almost healed, but it’s been interesting how I thought I was so prepared for what I would experience and yet the side effects were so different and unexpected. Same thing with my mouth sores. I experienced more burning this last time around compared with my original treatments where I just had some some yucky craters. I also had more tongue issues this time and did get to the point where I was so swollen I couldn’t eat and had a very difficult time drinking and swallowing, but it was okay. My pills became liquids or IVs and I got IV nutrients as well – HUGE bag. Thankfully, that passed too.
It has been such a blessing that everything has passed. I just have to be patient. Time can be a painful ally, or enemy.
Recent Comments