Snowy
Before leaving home, I asked Joel and Jake to make me a bear at Build-A-Bear at the mall. I wanted something to take with me, and I wanted the bear to have their voices. I ended up choosing a soft, white polar bear and Jake recorded a message for me to put inside. Joel tried to do it with him, but it was too loud in the store and sounded poor. Jake’s message – a very loud: “I love you mommy.” I have slept with that polar bear every night since I’ve been in Tampa – in the hospital and now in the apartment. I press the sound button in Snowy’s (the polar bear – I know, so creative) arm before going to sleep and although at times it makes me sad, it always makes me smile.
I had the idea to make the boys bears with a message from me. I think I had this thought because a few weeks ago, Joel told me that Jake cried because he missed me; it was really the first time we saw him realize my absence. He always knew I was gone but he’s young and went throughout his day; however, we believe time finally took it’s toll. All my ideas seem to be coming to me when I sleep and it just occurred to me one night that hearing my voice might help the boys deal with my absence. So last week, mom and I went to a mall and passed a Build-A-Bear and I did it. I made personal messages for Jake and Josh and stuffed them into two similar yet different bears. Jacob’s is called Cookie and Joshua’s is Brownie – I think I was hungry when I made them! I told Joel and we decided to give them to the boys during their Valentine’s Day visit.
Cookie (for Jacob) & Brownie (for Joshua)
I gave the boys their bear when they arrived late Friday afternoon. Jacob was not that thrilled; plus, my voice sounded muffled. It sounded fine in the store, but it was loud inside. We had a little boy behind us who literally screamed – just a high pitch scream for absolutely no reason at all. It actually gave me and mom a headache. Mom got Josh to giggle with his bear, and his message was completely clear. Before the boys left, I brought out the bears again and this time went better. Jacob even posed for a picture with the bear. Now, the bears are with the boys at home and hope the messages provide them some comfort.
Jacob with Cookie
Joshua with Brownie
I suppose this would be another reflection post. Two weeks ago I had a bad day with a terrible headache behind my left eye that mom and I think was caused by sinus pressure. It’s been a while since I’ve really felt bad so it bought down my spirits temporarily. While in bed the next morning with my headache finally gone, I couldn’t help but think that I let it get to me a little too much. I’ve been so much worse. Then for some reason, it got me thinking about how scary my situation has been. I believe I mentioned this briefly in a post long ago, but although medicine has come a long way, my bone marrow transplant is still a dangerous procedure. There’s a 25% fatality rate. That means 1 out of 4 do not survive; that’s a pretty sad statistic is in my view. At this point, it’s very unlikely that I’m in that percentage, but while in the hospital, it was always in the back of my mind. I would try not to think of it, but at times (especially when I felt my worst) it would surface. I’m pretty sure I haven’t shared this, but in the hospital, one of my fellow patients passed away. I didn’t know her name. She was on the opposite side of the floor, but her husband talked to mom in the family room. Mom talked to almost all the caretakers there. In fact, we still see several of them at Moffitt every day since we all were released around the same time. The poor woman had been on a respirator and lived for 3 days after it was removed. Those were difficult days. Being the floor’s star walkers, we would pass her room several times a day. Her whole family was there and it was just so sad. Her husband tried to keep a smile on his face (even after she passed) and he was just so nice. When this all happened, I was pushing a full IV pole while walking and dealing with my worst pain and not being able to eat solid food. The timing just made the situation that much more difficult to watch. At the same time, I had to be thankful that I was still alive and managing to survive. It may be cliche, but life is a gift that we often forget to appreciate. With my oral cancer in 2005, I experienced a passing that was much more personal. After my surgery, I often had to go to Miami for prosthetic adjustments and check-ups. On one such occasion, there was another woman with her husband in the waiting room and you could tell she was extremely nervous. My doctor came out and introduced us so that she could talk to me because I had already been through the surgery and was doing well with my prosthetic. Her name was Diane Blazy and she taught photography at the Ft. Lauderdale Art Institute. Her specialties were flowers and angels; she did beautiful work. She was in her 50s. We didn’t have the exact same oral cancer; hers was more serious, as she had to have lymphnodes removed. We talked, exchanged information, and Diane called me quite often while going through her surgery and radiation treatments. Again, since I was ahead of her, I could really tell her what to expect. She had a harder time with her surgery because of the lymphnodes, and she found the prosthetic more challenging. As time passed, the calls became more infrequent until I didn’t hear from her for a long time. Every year we would send them a Christmas card, then in 2007 we received a shocking response. Her husband, Bob, sent us a card with a newspaper article copy eulogizing Diane; the cancer had taken her life. The big “C.” That word makes people cringe and I know with Joel, I usually have to say I was “sick” rather than using the word “cancer.”
Be thankful for each day and avoid the stresses of everyday life because only God knows when it’s our time. I’m going to be working at this every day because, like everyone else, I get caught up and forget. I believe Diane and the woman on my floor are with the Lord and finally pain-free, but I feel for the families they left behind. Love each other and focus on the positive. Choose joy over anger and praise God for showing me the correct path.
Tags: Jamie, Reflection
We started the day at 7AM, early start. In fact, we were so early arriving at Moffitt that they hadn’t even unlocked the BMT office! We ended up waiting outside with another pair who actually turned out to be our next door neighbors at the apartments. Mom said she had seen them before, and we ended up chatting for a bit. The man’s caretaker seemed to really enjoy having someone to talk to; he even came back to us later that morning while we were waiting in the BMT office just to talk some more (we believe). He was really nice and we all told each other to come by if anything was ever needed at the apartments. We also saw another couple, who were on the BMT floor at the same time as I was. We hadn’t seen them in a couple of weeks, so we updated each other. He’s an interesting one because we often saw and heard him arguing with the staff – it’s that old “you catch more flies with honey versus vinegar.” Mom and I try to stick with the honey.
We had labs today and then our doctor visit. Things went pretty much as usual. I was good with the PA visit. It seemed like we waited quite a while for Dr. F, but when she came in, it was rather uneventful. My blood work is decent. My platelets are up to 88. My hemoglobin is 11, and my white blood cell count in 5.04. My liver is good and my kidneys are great. The only thing that’s a little low is my magnesium at 1.4 which is below the 1.5 minimum that I had last week so she increased my pills – yuck – and now I have to take four, four times a day (that 16!). One of my pills is getting exchanged for a previous one because the 3 week prescription is up. Next week, she wants to start me on the Gleevac and fortunately at the level that I seemed to fair well with previously. She’s also good to check my blood levels with it weekly since I have had problems in the past. Dr. F. will be at a conference next week, so I’ll only see the PA next Wed., but she said she’d be available via phone/conference call if necessary. The only other new thing was that she might take me off the infusion antifungal in 2 weeks versus having me stay on the whole time I’m here.
The last thing she gave us was another copy of my bone marrow results, but this time, there was an additional paper and she told us what the percentages were for. My neutrophis was 100% donor. My marrow was 100% donor, and my lymphoctes were 93% donor. That’s the same 93% from last week that she said is difficult for patients to reach 90% and usually takes at least a year. She also told us today that the 100% numbers are also difficult to achieve and often doesn’t happen. I’m still in awe of these numbers. I’m currently above the curve with them, which is just awesome. My next bone marrow biopsy will be around March 15th, but we do not have an exact day yet.
Tomorrow I possibly have my last physical therapy session. Beth, my main physical therapist, is going to try and justify me staying in PT at least once a week after Thursday. She knows twice isn’t going to happen because I’ve really improved. When I started, I said my energy level was 40% and when she asked on Tuesday, I said 70-80%. I think in the end, it will depend on the insurance. I will miss it; it really helps to have someone there to guide you. I find that I work harder. At home, I’ll do 10 reps, but Beth will ask me to try to get to 15 and I try and usually do. She challenges me and lately I’m always tired afterward. Plus, I get sore now, which she says is good. If I feel nothing, then we’re not really doing anything to help my strength and balance.
Joel is sick with a cold he apparently caught while visiting so keep him in your prayers. With two little ones, he needs a speedy recovery.
The boys are back in West Palm and, of course, I miss them. Luckily, our weekend together was memorable. The boys arrived late Friday afternoon, and we just hung out and had dinner together. I gave Jacob and Joshua teddy bears that I made at Build-A-Bear with message from me (expect a separate post on this); I can’t say Jacob was that thrilled but mom got Josh to giggle with his. Jacob did show more interest today before he left; he even posed for a picture with his bear for me.
On Saturday, mom and I made the boys Belgian waffles, which they seemed to like. Then Joel and I went to the flea market while mom watched the boys. It was fun just to be together; plus, I got to show Joel this shop with tiki’s. I bought one on a previous trip for Joel because it’s the theme Joel wants for our backyard pool area. Since he liked it, we got two more, but we still need more to decorate – maybe some tiki torches.
That night Joel and I went out to dinner at Red Lobster, which was decent. Busy, though. Apparently, we weren’t the only people who thought the 13th would be better than the 14th. Again, it was just nice to be out with Joel and spend time as a couple. Speaking of being a couple, this trip Joel slept in the same room as me. My room (as well as the guest room) has two single beds, so we were in the same room like it’s 1950, but I enjoyed not being alone. We watched some TV and said our good-night’s and love you’s which I had missed. I wake up quite often now, and what was great this weekend is that I could see Joel and listen to him breathe.
We also exchanged Valentine’s Saturday night via Joel’s request. The boys surprised me with a CD of pictures taken by a photographer (Dawn Yap) who used to work with him at the movie theater years ago. It’s amazing and so unexpected. I gave the boys their gifts too, but the boys’ gift still stands out. Here are a few of the pictures:
Didn’t Dawn do a wonderful job? They are beautiful.
Sunday morning we had waffles again because the boys liked them. We took Jacob to MOSI science museum and it was okay. We like some parts better than others. We had fun in the “Kids in Charge” exhibit because Jacob got to explore and manipulate.
Next, we went through a Da Vinci exhibit, but it was really more for adults. Jacob was not thrilled; the one exception was with the inventions. He actually knew that a sign with a hand that has a red circle around it with the line through it meant “No touch.” That’s literally what he told me. I was so proud. So he read me every sign, but I did have to explain when the sign changed and he was allowed to touch, which he loved. I only had to tell him once, and he totally knew the difference between both signs.
The rest of the museum wasn’t really impressive. There was Disasterville, and there were just too many loud noises. Jacob did not like it and the earthquake room we took him in made him seriously unhappy. There was an area about the human body, but for Jacob, it was more gross than anything. Plus, we kept finding things broken or just plain lame. Second to last, we watched an IMAX movie called “Under the Sea.” The only problem was that the film kept showing sea animals eating other sea animals in split seconds. It kept causing Jacob to jump and kept scaring him. I ended up holding him and later he sat on my lap, but I liked comforting him. The last thing we did was let Jacob play on a playground set that had numerous slides and he loved it.
Afterward, we went out to lunch and Jacob was actually really good. We took Jacob back to the apartment and then Joel and I went to Publix to buy some steak because Joel was going to cook for us, which he did even though he was starting to feel ill. Unfortunately, that continued and Joel ended up going to bed early and leaving pretty early Monday morning. Fortunately, we had time together before he felt sick. Joel went so far as to wear a duckbill mask around Monday morning because he didn’t want to infect me. It was a sad departure. Jacob kept saying he didn’t want to go, but then he seemed okay. Joel and I teared up, and little Josh has no clue but he sure is cute!
Charlie Brown heads BUT Josh has more hair!
Boo!
We waited a lot today. I’m finally off of isolation and back with everyone else, and that means waiting with everyone else. On isolation, I was actually taken early because they didn’t want me to stick around. It sounded bad, but it was really good. I’m still wearing the duck mask to be safe; people do not always think when they cough or sneeze.
So it’s Wed. and that means doctor visits not just for me but for most patients we seem to know. It was so busy today; the busiest I think I’ve ever seen. We had to wait in a long line just to get valeted. Then again long waits in the BMT room. In fact, we were taken to see the doctor first even though we were scheduled for labs first. The PA always comes in first and we had a pretty uneventful visit. My exam was quick and my blood work from Monday was good. Here’s the breakdown:
white blood cells – 9.93 (within range); hemoglobin – 11.8 (within range); platelets – 74 (decent, just don’t want to go below 40); magnesium 1.5 (right at the minimum); tacrolimus -11.5 (Last week I was at 8 and the doctor wanted me at 10, so she increased my pills. It worked.); and my liver and kidneys are doing well
There are other things, but those are the main ones or at least the ones I understand. What does it all mean? I’m doing really well right now, and for the first time, Dr. F had no reason to change my meds!
Dr. F had little to say today because the blood work, and so far all my test results, have been good. The “C” virus that 80% get is still under control and I’m on track for my 90 day suite of tests, which will likely be around March 15th. I’ll have to have another bone marrow biopsy (yuck, but I thought there was a 60 day one too and there’s not so yay), and they redo a lot of post-op tests like the pulmonary lung test and a few others I think. I’ll know more as we get closer.
Mom and I just had a few questions. Mom asked about my antifungal infusion and Dr. F informed us that I’ll be on it until I leave. She updated the order to last the full 90 days. It’s all good; the infusion’s purpose is to stop bacteria and infection. I used to get it everyday in the hospital too. Then, I had a couple of questions – all from Joel. #1: Did I need any further spinal treatments? I really didn’t want to ask that one because I was afraid of what Dr. F would say. So far, my spine has never been mentioned even though Dr. G back home seemed to constantly want to do spinal taps/chemo because I initially had cells there and he said that the spine is separate fluid and must be treated separately. Answer: Maybe in the future, but not now. Why? Dr. F said that right now it’s not needed, and could just cause complications with my BMT (I didn’t completely understand what complications exactly but it has to do with being post-transplant). Plus, the last few treatments done back home were all negative and my blood work is good so there are no red flags. However, Dr. F said that usually a person has 6 to 9 treatments on average; as a positive, she did say that it might not be necessary. #2: What percentage of donor cells are in my marrow? This was something Joel had been praying a lot about and he wanted to know where we stood. The bone marrow biopsy is supposed to show how much of my own marrow cells are left versus my donor’s. I forgot to ask last time, but turns out they didn’t have those results last Wed., but today they did so Dr. F printed it out for us. Answer: There are two types of cell analysis they look at and I’ll just quote them from the print outs. A – “The Post-Transplant analysis for CD33 sorted cell specimen from Jamie Quevedo revealed 100% donor cells and 0% patient cells. The sensitivity of this test is about 5% or less for a typical specimen.” This is exactly what we want. The donor needs to override and destroy my cells because let’s face it, mine were bad. B – “The Post-Transplant analysis for CD3 sorted cell specimen from Jamie Quevedo revealed 93% donor cells and 7% patient cells. The sensitivity of this test is about 5% or less for a typical specimen.” Maybe this seems decent, but it’s actually awesome. According to Dr. F, she wanted me to make it to 90% (which I have), but here’s the cool part. She informed us that reaching the 90% mark for this particular marker is the hardest to achieve and usually takes patients a year! I’m 57ish days post-transplant! It’s amazing! My doctor is super pleased with my progress and how I’m doing. She says I had a great donor. I really hope he wants to talk with me in a year; I already sent him a letter pre-transplant so I definitely need to write him soon about my post-transplant progress. I clearly remember being told that he sent a lot of blood and that the stem cells were highly concentrated. It was a small bag, only took about 15 minutes, and they still have two bags left on hold for me.
Great visit today. Thank you all so much for your continued prayers; it’s clear that God is answering them. Yay, God!
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) |
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| Jake at 1 year old (2006) |
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| Jake at 2 years old (2007) |
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| Jake at 3 years old (2008) |
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| Jake at 4 years old (2009) |
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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.