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November 17, 2006

Halloween was a success. Alyssa was the most beautiful Dorothy you ever wanted to lay your eyes on!!!

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It's Autumn in New York. Thanksgiving is among us, so I thought this page should be about what we all should be greatfull for...

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I am thankful Alyssa continues to live every single moment to the fullest. Regardless, of how she may feel physically. I am thankful she wakes up with a smile that brings the brightest of shine on the gloomiest of days. I am thankful to all the volunteers who constantly find the time to make impossible days more bearable. I am thankful to the band of mothers here at RMDH, they define the word mother. I feed off of their strength. I am forever thankful to my family, blood or chosen, they constantly show Alyssa & I support. And to those angels out there, the ones who walk and the ones who fly, I will forever be thankful for the blessings you bestow upon us, your guardianship over us and infinite love…

WISING ALL WHO COME UPON THIS PAGE THE VERY BEST THANKSGIVING! MAY WE ALL REMEMBER OUR BLESSINGS…

UNDER CONSTRUCTION…

We are in the process of making this page bigger and better.

Our sincerest apologies in our delay.

Alyssa and I would like to thank everyone in advance for their patience.

Saturday, March 25, 2006 12:12 AM CST

Hey Everyone!

SURPRISE!!! Told ya that I would update sooner rather than later.

Hope that all who come upon this page are in the very best of everything. As for Alyssa and me, we seem to manage and persevere. Alyssa continues to amaze me. She’s like the energizer bunny. Just keeps going, and going, and going.

Now to the nitty gritty. Alyssa’s EEG was uneventful. Well, except for the fit she through because at this point she just hates doing anything. Who could blame her? But with a little understanding and consoling she allowed them to perform the test. Did I mention it also took a bribe? Cake batter ice cream with snickers and kit kat in it from Cold Stones’ to be exact. Not just a cone either. A whole tub! Whatever it takes right? Anyway, the results were as I suspected. No real big seizure activity though there were abnormalities. This just means that she has seizure disorder. Like duh!!! We already knew that. So I’ve opted to keep Alyssa on her present meds. I don’t think she should have to go through anymore unnecessary changes if she doesn’t have to. She agreed, so shall it be done.

As for our surgical consult, there was good and bad. The good news is that she won’t have to have any surgery done on her shoulder. The surgeon opted to put her arm in a sling for a period of time. Upon further discussions with the surgeon, therapist, Alyssa and me we all decided this idea would not do either. Through different exercises we could relieve some of the stress on her shoulder. Over a period of time it will get better. Alyssa already has to wear a brace from her wrist down during the day. It started out as part of the day and has changed to all day. Now she must wear a special brace to sleep. Alyssa thinks enough is enough with the contraptions and I agree.

The bad news is that they found a spot there. Upon hearing this news Alyssa became very alarmed and cried out “I’m not having surgery again.” She cried like baby. The surgeon at this point does not believe it to be cancerous. But it will have to be monitored very carefully. My gut tells me that we will have to take of this sooner than later. So the plan we’ve come up with is to monitor it and scan again in a couple of months. If it has changed in size or shape they will have to go in. So for now Alyssa and I will take it one day at a time and hope for the very best. I will admit that I am very worried about this thing. More so due the fact that Alyssa has undergone a lot of radiation. This does cause secondary cancers to occur. But gonna keep it in perspective. If not for me then for Alyssa who remains the most positive force in my life.

In keeping true to the spirit of Alyssa and her attitude of life, I have decided to contribute in a positive way. I will be doing the Revelon run/walk on May 6th. This 5k run/walk is to bring awareness, research and find a cure for women’s cancers. On a more personal note, someone whom I hold dearly has been touched by breast cancer. In our very personal conversations it has been mentioned that she would like to participate. Physically she won't be able to walk. So I'll walk for her. This is where I make a plea for all to pledge a donation and sponsor me (big toothy grin). I’ll do the hard part. I start training Monday. We all can make a difference. Yeah, I know this is a cheap shot but whatever it takes to help get rid of this horrific monster that continues to touch all of our lives. If you are interested in sponsoring me, please feel free to contact me via email for details. Oh! Did I mention that the Pediatric Cancer Research walk is coming up also (another big toothy grin)?

As always, WISHING YOU ALL JUST ENOUGH and LOVE YOU ALL MORE THAN MORE...

Sunday, March 5, 2006 8:06 PM CST

Hey My People,

Yeah, yeah it’s been awhile. I know, I know. I would hang my head down in shame but I need to look at the monitor to do what I have to do. So you must forgive me.

Well, you know what they say, ‘No news is good news’. That has been the case since our long absence. Alyssa is just plugging away amazing all who see her. She continues with her busy schedule of doctors, therapies and schooling. She has made honors this marking period. She has maintained an average of 85-90.

Her last MRI showed that she was stable. On an even brighter note, though there was no significant change from the past MRIs, there was a very small decrease from her scan of August 2005. It’s not much. Wish it had been significantly more. I was upset for about two minutes when I heard that she was stable. It’s been so long. She’s endured more than I think to be humanly possible. But then I realized that this was in fact a step in right direction. Something is better than nothing. So we’ll take it and keep moving forward. What’s the alternative, right? Her chemo is ongoing. Her counts seem to remain steady, which continues to be a wonder to her doctors, especially her hemoglobin. It does fall a bit but bounces back just when I think that she’ll need a transfusion. Considering that she is on two blood thinners I would have thought that would have been a norm by now. How grateful we are that it hasn’t. The only problem with the blood thinners is that we haven’t reached a therapeutic dosage to bring her down to only one. But we’ll get there, I have no doubt. The only major side effect that she is experiencing now is chronic fatigue, some severe constipation (needing several laxatives at the same time), to serious diarrhea and drooling. Sometimes she’s so tired that she can literally sleep 24 hours. Only waking to eat something and use the bathroom.

We have however hit a few glitches. Alyssa has been having seizures again. At the beginning of this journey it was discovered that there was a piece of tissue next to the tumor causing her seizures. So when the neurosurgeon resected what they could of the tumor, they also removed that piece of tissue. Poof, no more seizures. Up until now they were controlled. Couldn’t say when the last episodes were. I actually had to look them up. It has been quite awhile. But they’re back. We (Alyssa, her neuro-oncologist and I) are now considering putting her on another anti-seizure medication. It’s a little tricky. First, we have to find one that can be taken with her chemo without any interactions (there are only a few). If we do find one, we have to wean her off the Keppra. She’s already maxed out on the highest dosage possible. The weaning process maybe a little tough. In all likelihood, she’d probably have more seizures before they would be controlled. But before we go ahead Alyssa will have an EEG done. This is a simple test. Electrodes are adhered to strategic points on her head. The only discomfort Alyssa will experience is that she does not like the smell of the gel used to make the electrodes stick. She will then be monitored for a period of time to see if the machine picks up any seizure activity and just how much. During this process, there will be a constant strobbing light in effect, along with different patterns of images showing to her. Sort of like some psychedelic movie. This is going to be done tomorrow morning. We’ll decide what to do from there.

Alyssa was also experiencing some pain in her shoulder during occupational therapy. Her therapist did discover some abnormalities upon exam and decided to have an MRI of the shoulder. I assumed that, though I didn’t doubt that Alyssa was experiencing pain, I thought she was maybe exaggerating the extent of the pain so that Mckenzie (that’s her OT) would go easy on her. But to be safe we went ahead with the MRI. Unfortunately, there was something wrong. Her rotator cuff is displaced, along with the bicep muscle that is disconnected and some atrophy of the muscle. So what all this means is that on the 14th we will visit with the orthopedic surgeon to see what needs to be done. We’re hoping that surgery can be avoided. So we’ll have to get back to you on that too.

Well, before we all get worried bout any of this I want you all to look in her photo album (yes, there is one now) and remember just how amazing Alyssa really is. I’ll worry enough for all of us

Guess I’ll be updating a little more regularly in the next couple of weeks, huh?

WISHING YOU ALL JUST ENOUGH AND ALWAYS LOVE YOU MORE THAN MORE…

Wednesday, December 7, 2005 2:19 PM CST

UNDER CONSTRUCTION...

WILL BACK WITH CURRENT UPDATES REALLY SOON!!!

Thursday, November 10, 2005 11:06 PM CST

Hello All,

Glad you haven't forgotten us. We definitely haven’t forgotten any of you. Our sincerest hope is that all is well with you and yours.

The following events take place between the dates of October 24 thru the 29th.

Well, since our last meeting there has been much to tell. Where to begin is the problem. Guess I should start where I left off last. We were off to Disney on Alyssa’s wish granted from the Marty Lyons Foundation. We were so excited. There were many things to do before we left. Teacher to meet every morning from 8:30 – 10:30 am, then off to the PDH to have blood counts, physical therapy, occupational therapy and between all of that still have to cook, clean, do laundry and all the other c--- that has to be done. Well, throw in packing for two, making sure not leave anything behind that Alyssa would need. That was all to be done before we left.

Well whoever Murphy is I don’t particularly care for his law. Everything that could go wrong did. It was like someone was placing obstacles in our way so that we wouldn’t get to where we wanted to be. Our week was pretty full. Alyssa’s counts were pretty steady. But that pesky hemoglobin was being a pain again. So we started the week tired but knew that Alyssa was coming to the end of her cycle. Alyssa is always tired by then but we knew her energy would bounce back just in time for our trip. Her levels for the blood thinners were off. They were to low. So we had to increase the Lovenox, which is the injection. We went from 7500 units a day to 10,000 units a day. Big jump… I wasn’t pleased. Though it’s still just one injection, that’s a 2500 unit jump. I was under the impression that we would be weaning her off the injection and only staying on the Coumadin but… So we played with that for a few days.

Then Wednesday I realized that Alyssa’s wheelchair had been stolen. Right from in front of our door! Everyone knows Alyssa and that chair. No need to tell you how pissed I was. Just couldn’t believe it. Searched high and low. Reported it to the management here. Let’s just say I wasn’t very pleased with the results. Thank goodness for friends. Mel, that’s the Ausssie chick, and Therese, that’s the Jersey chick kicked it into high gear for me. They helped me look for the chair. Nothing turned up. I had made hand written signs and posted them throughout the building nothing. Thursday I was back in clinic again so Mel and Therese made computer generated signs and posted them everywhere. Walked up and down the building including the stairwells, nothing, I was thru. I and Alyssa continued with our daily routine. We continued to make plans for her well deserved holiday.

The Friday before we leave, we had to go to clinic for physical and occupational therapy. For good measure and our peace of mind a final blood count to make sure Alyssa’s hemoglobin was up to par so that we could fly and have a good time. Well, on our way into the hospital Alyssa has a seizure. That’s right a seizure. She was so funny about it. I hadn’t noticed it was going on till she said “ Hey mom, my leg is doing the jumping dance thing”. I nearly had a heart attack. It’s been awhile since she’s had one. So needless to say I was alarmed. After numerous blood tests, neuro exams and a cat scan we were told at 5:00 pm that we could go on Alyssa’s holiday. Provided that she didn’t exhaust herself and that we would carry a valium suppository in the event that Alyssa would have other seizures. Little did the great doctors of Sloan know that regardless of what they said I was taking Alyssa on her holiday. She’s been through the fire and back again. She deserved this and no one was going to take this away from her. So off I go running to wash, pack, iron and clean the room so that I could be ready for a 7:00 am pickup. I will admit that I was a bit nervous about leaving. What IF because of my stubbornness we went and something happened to Alyssa. Once again, Mel and Rob, he’s the Jersey Guy came to my rescue and didn’t even know it. They knocked on my door 6:45 am to make sure I was ready, help me bring down Alyssa, luggage and HER WHEELCHAIR. Did I mention that I mysteriously found it about 11:00 pm the night before on the 12th floor stairwell landing. Right next to the storage area that I didn’t know existed. Yes, I do believe that the missing wheelchair was an intentional act. I have been inadvertently informed as to who did such. Because of our living situation I am not able to come forth with this information and address it with the person who I now believe committed this atrocious act. But I do believe in “what goes around, comes around”. And when it does it I sincerely hope it bites them harder in the ass than they thought possible. Anyway, back to Mel and Rob. They were great and more on time. I don’t even know if they know how much that meant to me. Thanx guys!!! They were there when we arrived down in the lobby to see the biggest stretch limo I have seen. I couldn’t even describe to you the look on Alyssa’s face when she realized that it was to Wisk her away on her holiday. So glad Mel and Rob were there to witness it. Thanx again!!! You guys let me know it was going to be ok and that I could be excited. Now Alyssa was totally psyched! I think in the back of her mind she wasn’t going to make the trip so she didn’t let herself get excited till she saw the limo.

Off we went, boarded that plane with Steve (he accompanied us) and landed in sunny Orlando at 11:20 am. There is just so much to say about our adventure. I’ve pulled on your eyes for so long now that I believe I shall leave it all for the next entry. For more has come to pass since our return. But I will tell you this. When Alyssa chose Disney World for her wish I was not pleased. Mainly because we have been there before on several occasions. When I asked Alyssa why with any wish she could receive would she go and choose Disney again, her reply was quite simple. “Mom” she said, “Disney is the happiest place on earth”. Guess what? It was…

Promise, the next entry won’t be far behind. Just thought I’d give you all some time to read this before going on to the details of our trip and all the events since our return.

Till ink touches paper… Or in this case fingers stroke keys...

AS ALWAYS LOVING YOU ALL MORE THAN MORE!

Saturday, October 29, 2005 0:01 AM CDT

*THOUGH YOU ARE NOW SEEING THIS PAGE THE ACTUAL DATE OF ENTRY SHOULD HAVE BEEN OCTOBER 24, 2005.


Hey Again To All,

Can you believe I’m updating the page again? Wait, that’s twice in one month. I am very proud of myself. LOL

Hope everyone is doing well. Alyssa continues to thrive. As of today we have only three more days to complete this cycle. She is tired but as always continues to remain in good spirits. That pesky hemoglobin just won’t do it’s thing but we’ll get it right yet. On October 14 Alyssa and I took a trip to the Hematology Specialist. Yes, Alyssa has acquired Lupus. For those that aren’t familiar with Lupus, it is an auto-immune disease, which in dollars and cents means that Alyssa is in essence allergic to herself. Most side effects are flu like symptoms such as runny nose, aches and pains. It should be known that Lupus can attack your vital organs. WE WON’T EVEN GO THERE! ALYSSA AIN’T HAVING IT! AND TRUTH BE TOLD NEITHER AM I. So we’re gonna take that one in stride. The doctor could not tell me how this came about. They just don’t know. One theory is some people may acquire Lupus after long term therapies. And as we all very well know Alyssa is definitely one of those people. Anyway, since Alyssa has been treated for thrombosis (blood clots), she was put on therapeutic doses of blood thinners to keep this from happening again. The antibodies of Lupus can cause blood clots. We are now on two different types of blood thinners. One called Lovenox (dig the name, like there’s any love in injecting yourself everyday) and the other is Comudin. So there’s been plenty of blood work making sure that Alyssa’s levels are within the norm. We’re hoping that once she is on therapeutic dose we can ween her off the injections and just do the Comudin, which is in pill form. Unfortunately, we haven’t reached a good level so we continue on both medications. These blood thinners can lower your platelets substantially. My only fear is that should Alyssa fall and hurt herself she can bleed very easily. Let’s just hope she doesn’t.

It took some time but Alyssa has started physical and occupational therapy. Angie, that’s her physical therapist, is a miracle worker. It’s just amazing to see. Alyssa has now worked up the confidence to walk around without the walker. Not for very long periods of time but still. Today Angie said she rode the stationary bike for two whole minutes. She did lunges off of stairs and then walked up those same stairs back to the PDH (pediatric day hospital) and walked into the playroom. Everyone was just amazed. Everyone we know stopped and congratulated her, giving her their best and simply just being genuinely happy. It always does the heart good to see one of our kids, I say one of ours’ because when we parents spend so much time together we sort of kinda adopt each other’s kid and the kids sort of inherit surrogate parents, do well. The simplest victory can be the spread of the greatest hope. After a period of time hope kinda gets lost in the shuffle of everyday.

Whoa, a little heavy. So I’ll end this entry with a smile. We were in the PDH, the playroom to be exact. Alyssa was in a terrible mood. Yes, she is human. She does have those from time to time. They’re usually reserved for me but we can discuss that at another time. Anyway, she was in a frightful mood. Jay, which is one of the volunteers in the playroom and who is very talented at creating balloon art, had made Alyssa a sword. I didn’t know this at the time but she had requested a sword. Well, it was time for therapy. Mackenzie (the occupational therapist) walks in all smiles and sits down next to Alyssa. Alyssa informs Mackenzie that she was not going to do her therapy and that if she didn’t go away she would stab her. Apparently Mackenzie didn’t move fast enough because before anyone knew what was happening Alyssa was stabbing her with her balloon sword. I then scold Alyssa, might I add that I was laughing when I scolded her. No one wants to believe me about the temper. Anyway, I tell Alyssa that she has no choice in the matter. That therapy was for her own good. That I could only imagine how painful it must be but it would be well worth it in the long run. Alyssa’s response was “Well, I don’t care. I’m not going to do it. As a matter of fact I’m leaving”. In that instant, she pulls herself out of the chair, gets up, gives us all a dirty look and walks out. Literally… Took me about 2 minutes to pick up my mouth from the floor and take chase after her. She was already by the elevators when I caught up to her. I threatened punishment; she agreed to get off on the third floor. That’s where the rehabilitation room is. LOL I will add that she worked her butt off for an hour and came out with a smile. THAT’S ALYSSA FOR YOU!

By the way, Alyssa and I accompanied by our friend Steven will be leaving for Disney World this Saturday. Weather permitting of course. Hope it’s a blast cause I was just informed today that scans are coming up. Ya know what that means. EVERYBODY START CROSSING THOSE FINGERS. AND THROW IN THE TOES FOR GOOD MEASURE.

Well, the week ahead will be long and I’m positive it will be filled with other humorous episodes. So as always, WISHING YOU ALL THE VERY BEST OF EVERYTHING & LOVE YOU ALL MORE THAN MORE…

Wednesday October 11, 2005

Hello everyone,

Please excuse our long absence. It's taken me quite awhile to figure out exactly what this page should be. I've decided it should be a page filled with humor, some insight and plenty of love...

Just to get the medical out of the way... As of today's date, Alyssa is, all things considering, relatively good. We have begun another cycle of chemo (day no. 6) and starting to get tired already. She's experiencing diahrea and can't seem to bring up her hemoglobin to where it should be. But Alyssa continues to get up every morning, studies with her instructor for two hours, then goes to clinic for blood work, physical & occupational therapy (two hours three days a week, does homework and still manages to smile... AMAZING

Yes, it has been awhile. There are so many things to bring up to date. On our last entry Alyssa had just finished having her mediport removed and replaced with a new double. Plus have oral surgery. Might as well let everyone know that the double mediport will be removed once again in the very near future. The idea behind getting a double was that if one didn't work the other would. Well, that theory went out the window with the tears and yells Alyssa has endured. So as soon as I get a surgery date I will let everyone know.

As I last informed you all, Alyssa was set up to meet Destiny's Child. All involved in pulling this meeting had agreed to not tell Alyssa. To let it be a big surprise. A limo was sent for us to go to BET's 106th Street & Park. That's Black Entertainment Television for you unhip ones ;) Alyssa thought that we were just going to see a taping of the show. She was excited just for that. In the teen world music videos is life. When Destiny's Child came out on stage and announced that they were inviting a special person to their concert Alyssa just blurted "That person is just so lucky". Imagine the look on her face when she realized that they were pointing to her and her friend Alex. Couldn't smack the smile off her face. She's still talking bout that one. She was asked to come on stage and meet them personally and take photos. All this taped live on television. Alyssa was overwhelmed when her family, friends and peers called her that evening to let her know that not only had she been seen on television but that she was a star. True to their word Alyssa attended their concert the eve of her 18th birthday and again spent time with them on her birthday the next day. They sat in the diningroom of the Penthouse where she informed Kelly that Beyonce was the best performer of the trio. But that she seemed to be the friendliest which Alyssa also told her was always better cause not only could she sing but she would make more and better friends. And you could always use those.

Yes, that's right. Alyssa is now 18 years old. According to her, because she was misinformed, she is now an adult able to make her own decisions and do as she wished. Had taken on the attitude and the mouth she thought fit because that's what came with independence. I gladly informed Alyssa that she was only legal to register to vote and be drafted. That I was still responsible for all until she turned 21. Have to tell you all that I went there. Never thought I'd say it. Swore up and down I never would. Imagine my surprise when I heard my mother's words but in the sound of my voice come out my mouth, "I brought you in this world I'll take you out"!

Of course we celebrated this milestone Puerto Rican style. You know, the 3 F style. FAMILY, FRIENDS & FOOD. There was plenty of all on hand. Once again I am overwhelmed when I realize just how much Alyssa is loved and how much she has touched others. She's been able to accomplish in 18 years what takes others to do in a life time. Uncle Jeff, please let me take this moment to thank you once again for your amazing gift. You were able to capture all her goodness. Everything that is so happy, loving and amazing about her. YOU ARE AN AMAZING TALENT. YOU UNDERESTIMATE YOURSELF. I LOVE YOU. THANK YOU ALWAYS...

There is still so much to catch up on. In the days to come I will let you all know how our summer went. The amazing people we have met, famous and the ones that should be... As we head into fall, The Holidays (that's right there here again folks) and just Alyssa's amazing journery, there should be more to read really soon.

As Always, LOVE YOU ALL MORE THAN MORE! Till the next one...

Tuesday, June 21, 2005 4:26 PM CDT

Hey My People,

Well, to bring you all up to date, Alyssa has had quite a few things happen to her in the past few days.

Upon a rountine dental appointment it was discovered that Alyssa was in serious need of dental repair. Due to prolong use of steroids, chemotherapy and radiation Alyssa's teeth deteriated. The routes were just fine but the teeth themselves were literally breaking off. So on June 17th, Alyssa went into a surgical room and was put under general anesthesia. Twelve teeth were extracted. Two received a route canal and a few in the front were restored. And since Alyssa was already under we went ahead and had her mediport (which was not functioning properly) removed and a new double was put in.

We arrived at the hospital at 6 am. She went into the surgery about 7:15 or so. Alyssa did not come out of surgery until 2:15 or so. I was not allowed to see her until 3 that afternoon. Needless to say I was a wreck. But then I got to see her and be with her and I was fine.

She was given morphine for the pain and we remained in recovery until 8 that evening. Amazingly enough Alyssa remained in good spirits and just wanted to know if she still had her front teeth at least. I reassured her that she did and she was elated. She was uncomfortable to say the least but like the trooper she is continued to proceed with a smile on her face. I packed her face with ice everytime she slept which was all day Saturday to keep away any swelling and bruising. It worked! No one could tell that she had been through such an ordeal.

That Sunday she readily and happily received visitors. Aunt Gladys, Uncle Jeff, Cousin Gloria, Tia, Trinity, Elyse and Gloria's sister Cheyanne graced her with their presence. Alyssa not liking all the attention :) shined brightly. THANK YOU ALL SO VERY MUCH. IT WAS JUST WHAT THE DOCTOR ORDERED. She felt so much better that at dinner time she felt brave enough to try hard food. Unfortunately that didn't go to well. Because she could not chew the food down, when she swallowed she literally choked. When I realized what was happening I jumped up and stuck my fingers down her throat and literally pulled the food out. Alyssa has decided that she will follow doctor's order and stick with soft foods for just a bit longer.

Though she has come down with a viral cough and slight fever the doctors assure me that there is no sign of infection or pnemonia which is a possibility after being under anesthesia for a length of time. She's still sore (taking codeine as needed) but not so much her teeth but around the port incision which will remain stitched for approximately 3 weeks and cannot be wet and kept as sterile as possible considering that they recommend not covering it up with surgical gauze. Guess they know best...

On a very brighter note, Alyssa will hopefully be meeting some very famous people tomorrow. I haven't told her for it's a very big surprise. But if all goes well, tomorrow she will have the priviledge of meeting Destiny's Child and if you know anything bout anything that's a really big thing for a girl. Will definitely let you know how that goes.

Till the next one I send out all our love and energies to all and hope that you all remain in the very best of the very best... LOVE YA!!!!

Thursday, May 26, 2005 11:32 PM CDT

Hello everyone. I know it's been awhile and we do hope that everyone is doing well.

Previously, I mentioned that Alyssa and I were interested in obtaining a radio control water boat to spend our time in the park. Alyssa was truely shocked to receive an unmarked package a little while after. When she opened this package and saw this boat her mouth literally hit the floor. You remember Christmas as a child to open up that one gift you hoped for but didn't think you'd actually get. The look on your face when it finally registered that you did in fact receive that one special thing and how it felt. That was the look on her face. Tears still come to my eyes when I think about it. The memory of that moment was priceless. And because that special package was unmarked I like to take this time to THANK THAT AMAZING SOMEONE for that very special gift. Words can never express how much that memory will forever mean. That simple act of kindness helps me to believe that there truely are selfless people out there who truely, utterly know the meaning of love, how to share and extend it to others without any demands, expectations or deserving gratitude. MAY YOU CONTINUE TO BE BLESSED FOR THAT IS TRUELY QUITE A RARITY TO FIND. I have to say that it's quite an awesome feeling to find a ROSE AMONGST THE WEEDS. I am so very glad that I did. By the way, we set sail that very weekend. To quote Alyssa, "This is way too cool".

Now to other things...

Last entry I mentioned Alyssa's upcoming MRI. The actual date was Friday the 13th of May. We were to be in the hospital at 7:15 in the morning. I don't think that either one of slept very much the night before pending this test. We arrived at clinic, Alyssa was hooked up to an IV and up we went. The IV is to administer the contrast so that the radiologist can read the results more clearly. I know, I'm dragging this on... Well after comparing this MRI to the last one there was sort of good and bad news at the same time. The good news is that from the back of the tumor there appears to be about 1/4 centimeter decrease in the mass. The bad part is that from the front it appears to be the same if not just a tad bigger. The tumor itself still looks highly malignant. There also was an incidental finding of a left parietal lobe developmental venous anomaly and it was again determined to be of no clinical consequence. No I don't know what that means. Yes, started doing research. Didn't know that they had found anything else previously. This information came in the report. I must tell you that normally the doctors don't give me a copy of the report. Ususally they tell me the results and we carry on from there. What I believe happened was that they were so content with the fact there was the slightest decrease that I guess they wanted me to see for myself. I'm assuming...

Alyssa and I have talked about the results. I have to tell you that I sort of knew what the results were. Mother's instincts. In talking to Alyssa, once again she has put things into perspective. Alyssa's words to me were at least it's something. It's going slowly but it's going. So that is what we'll focus on. The queen has spoken and so shall it be :)

On another note Alyssa tested positive for Lupus Anticoagulent. Yes, we all have to learn another big word. Essentially what it means is that Alyssa's body is allergic to itself. To combat this allergy Alyssa is producing antibodies to fight off herself. Know it's confusing. But this is my understanding from information I have found. Unfortunately, this can cause the body to produce blood clots which in turn can cause other complications. So as a preventative measure she has been started on a regimen of blood thinners. This was very upsetting to her but she's a true trooper. This medication is given by injection daily. Again, she is taking control of the situation and GIVES HERSELF THE INJECTIONS.

With that I'll let you go. Please do not be dismayed. I get upset, alarmed and worrisome to the point that I can't sleep for days. I then remind myself that she continues to grow strong emotionally and spiritually everday. She looks great and has went from 196lbs. to 161lbs. Due to a change in steroids. She always wakes up with a smile on her face every single day even when she's not feeling quite herself.
And if nothing else, it could always be worse :)

LOVE YOU ALL...

Thursday, April 21, 2005 4:37 PM CDT

Hey everyone... Hope all is going well with everyone. Please forgive me for not keeping up with all of you. Have no real excuse but pure lasiness. That and the nice weather set in so Alyssa and I try to go out everyday for a little while. It's been a long cold winter. It's nice to see the flowers blooming and the trees coming back to life.

Well, Alyssa completed her 11th cycle fairly well. As expected she was very tired at the end, with bouts of diahrea and lowgrade fever. But once again she came through with flying colors. Of course just to keep it interesting she decided she would get some sort of rash that was not explainable. Looks like an allergic reaction to something. Unfortunately, we haven't figured it out. Upon a conversation with Alyssa's nurse practitioner we have thrown around the idea that it may be a reaction to the chemotherapy. Have been keeping a close eye on her to see if it coincides with the chemotherapy. As of April 11, we have begun our 12th cycle. Haven't come to any conclusions just yet. Have my suspicions but don't want to jump the gun. If our theory is correct, I'm afraid there would be talk of changing therapies or some such nonsense. So we'll try to ride it out a little longer. When it because to bothersome her she is allowed to take 12mg of benedryl but of course becomes sleepy. Spends alot of time sleeping.

Upon entering our 12th cycle, our counts are ok. Platelets are excellent. Our hemoglobin and white cells started on the low side. Even during her 7 day break they still fell. So we just make sure we get enough fluids down and stay away from anyone who may be with cold, virus and things like that.

At the end of this cycle we will be heading for the dreaded MRI department. Let's just keep our fingers crossed.

On a brighter note, Alyssa met Tracy Morgan. He is one of the comedians from Saturday Night Live. He was quite taken with her and you know she loved the attention. The funniest thing was that Alyssa carried on with him like she knew him and his work. She didn't have a clue who he was but she was gracious enough never to let him know that he isn't the big star he thinks he is. On our many outings to Central Park, we spend a lot of time by the boat pond. So we are now on a quest to find a model motorized boat to sail on the pond. And of course she still continues to color. Alyssa has become interested in glitter art. That's when you draw things with glue and color it in with different colors of glitter. It's pretty cool.

And on a personal note, Alyssa and I would like to take the time to thank the family, and their friends (the extended family),who took the time to come read about her and sign her guest book. It has touched her profoundly. She now knows just how special she is. KEEP IT COMING... Till the next time, sending all our love...

Saturday, April 2, 2005 8:31 PM CST

As of March 21, 2005 Alyssa has entered her 11th cycle of Zarnestra. As of today the drug has not done much in conquering this monster. But it has kept it from progressing so we are greatfull. As we all know this is an experimental drug still in study. It is not FDA approved. She seems to tolerate it fairly well. As with all chemotherapies there are side effects. This one has to many to list. She does experience extreme nausea and fatique. Her counts have held fairly well. When I say counts, every week she is tested for her hemoglobin, white and red cells or platlets. Her platlets have remained steady and strong. Her hemoglobin have fallen below normal as well as her white cells. Hemoglobin is given a range of 11 - 20. Right now where at 10. Which adds to her fatigue. If she falls to 8 she will have to be transfused to get her up to speed. As for her white cells the range is same. Last count was 5. Which increases her risk for infection. If they continue to drop she will have to be put on a nutrapeanic diet. Which basically means no fresh anything. Everything has to be prepackaged or cooked to death.

Through out all of this she continues with her studies everyday. Has drawn, painted and colored countless pictures. Still finds humor in about everything. She watches her soap operas everyday (Jerry Springer & Maury Povich). I know, I know but she has explained to me that these shows are very informative. Supposedly "They teach her everything she needs to know about men and how they should treat women". She still loves the Knicks and was very outspoken about the game they just lost. Which has handicapped them in their bid for a playoff spot. She has also attended a broadway play this week. I was not invited to attend. It was her first experience out without me. Yes, I was a bundle of nerves. But was informed that "I had to get over it. She's gonna be 18 and is now grown". Like I wasn't there for the birth right? ;)

Well, as you can see she has taken responsibility for herself and her disease and continues to thrive regardless. I am working on accepting this. Please forgive me during this process ;).

P.S. Am working on loading some pictures for all to see.

Wednesday, March 30, 2005 12:48 AM CST

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