#87

Tuesday May 8, 2012

Dear Aj,

A year ago this month we found your tumor. Those were some of the scariest months that I have had to go through. It all has worked out, but I am still scared when I see a bruise, if you nap longer than normal or anything that could be a sign of cancer. I know that these are all very silly things for me to worry about now. Your tumor was benign, it was completely removed and not the kind to spread. Still I have spent this year on high alert with you, I have gone from Red alert and am currently trying to bring myself back into normal range. You are and will always be my baby and it is my job to protect you from bad things happening to you. I have to trust in myself that my Mommy instincts will kick in again if needed and I will always listen to that voice that a year ago let me knew something was wrong. For now it has been a year, your tumor is gone your AFP is in normal range and you are developing like any normal toddler should. We're so lucky and I thank whomever everyday that the path that we were given was just that and not one down another scary road of chemo treatments and extended hospital stays. That path is out there and I am very much aware that it could have been our world today, but it was not. I feel that on this week, the one year mark of finding your tumor it is time for me to put my fears behind me and know that we will not have to travel down that very scary path. My heart and support will forever be with those mothers, children and families. We will always go the extra mile to support them, because it could have very easily have been us. When you growup and are healthy, remember that please. Remember just how lucky you are. I know I will.

I love you more than you will ever know,
Mommy

Celebrate Good Times... Come On!

On Friday August 12, 2011 Aj, Grandpa and I made the familiar drive into Oakland to go visit our favorite  pediatric  oncologist Dr. Goodman.  Three month back when we found the tumor the Doctors noticed that Ajs AFP was also elevated. After the surgery his AFP never dropped like we were expecting, since then we have been watching his levels very closely hoping that they would fall back into normal range.


Aj's AFP History
5/25 - 35.4, 5/31 - 31.1, 6/7 - 25.8, 6/14 - 30.3, 6/21 - 21.5, 6/28 - 23.06, 7/5 - 28 and finally 8/9 - 27.8

Most doctors would consider 0-15 to be the normal AFP range.  Since day one Aj never has done anything normal, so why would his AFP be any different? Dr. Goodman is confident that because everything else looks good that this slight elevation in his AFP just happens! He is eating, sleeping and playing like a normal healthy little boy. All his blood work and ultra sounds are also coming back normal.  This all comes down to.... Aj has been given a clean bill of health... its time to celebrate!!!

In this time of celebration, I would like to take a moment and send out a prayer for all those families who are still going through the fight or who have lost the battle. My thoughts, love and prayers will always be with you

#45

Tuesday July 12, 2011

Dear Monkey,

As we drove home tonight after a long day of work I heard you in the back seat babbling and it was music to my ears. No matter what kind of day I have had you always seem to make it better. Sometimes it could be a smile or an especailly tight hug, they are small little gesture that makes my heart melt.

For the last month or so I have been introducing you to finger foods. It was wonderful watching you go from sometimes being able to get the food into your mouth to being pretty good at feeding yourself. You are just too cute when you eat, you are just so proud. You sit up nice and tall in your highchair, and make this big wide hand gesture as you bring the food to your mouth. Once you taste your food you somehow manage to make your self sit up even higher with proudness oozing out of you. With every ounce of your body, you project this since of accomplishment.

 Your list is growing everyday, especially since you have started  to show signs of becoming a picky eater. We have started a full blown campaign of "What will Aj Eat". I want you to enjoy food as much as your Daddy and I, so I have vowed to show you all the wonderful foods out there. As of tonight, here is your list of Top 3 Favorite Finger Foods
1. Blueberries
2. Tofu rolled in Cereal
3. Cheesy Toast

We met with your Oncologist on Friday and everything went well. Your AFP is still registering high however everything else is looking good. You're eating and sleeping well you are not running a fever and your lymph nodes that are swollen are only the size of a pea. In a nut shell we are going to watch you closely over the next couple of months to see how you do. You have no idea what a sigh of relief this was for the whole family. We felt blessed that you would not have endure any more pain or discomfort.

As always my little monkey remember that I love you very much, my life revolves around you and I am only happy if you are happy.

Love from the bottom of my Heart
Mommy

#42

Tuesday June 21, 2011

Dear Aj,
What a week! We got some great news about your tumor, we found out that the tumor is a Mature Teritoma which is non cancerous. We are not out of the woods quite yet, for the next couple week we will be watching your blood levels really closely.

As always life goes on and you keep growing and developing into who you are to become. On Sunday your Daddy found you standing up in your crib just like a big boy. This is just one of the ways that you are transforming in front of my eyes. You are demanding more and more solid foods, purees that used to be your favorite you just cant be bothered. You are loving finding the new textures and taste of solids. You are letting me know the foods that you do not like, but Mommy is persistent and I refuse to let you be a picky eater. You have become quite the little mover and shaker, you are crawling all over the place exploring your new world, you are so proud of your self when you pull your self up to standing.

As always everyone is infatuated with you. When you saw your doctor they all commented on how you look like the Gerber Baby, your Daddy has been trying to talk me into putting you into modeling maybe you do have career in your future. only time will tell

Today we had to go and get your blood drawn. You were such a brave little boy, you had your pacifier and your ipod ready and you only cried once! I was so proud of you.

I will love you for Always
Mommy

Nearing the end of our Journey

We met with Aj's Oncologist on Friday and had a very positive meeting. She broke down all of Aj's test results for us. Here are the cliff notes:  Aj has a Pure Mature Teratom, which is great! The tumor was benign and the doctors were confident that the tumor didn't spread. I can't explain how relived we were to hear the confident in the Doctors voice as she explained to us the good news. The one thing that did concerned her was that Aj's AFP went up, not down. She reassured me that this could be normal but we may want to be a little bit more aggressive with our monitering.

AFP is tricky because babies tend to have a elevated levels to about six to eight months of age, doctors are finding that sometime it can take a child up to one year for levels to drop into normal range.  The reason why we keep mentioning Aj's AFP and why we are watching it so  carefully is because AFP can be used to detect certain types of cancer and liver problems.  Kaiser says that "Normal" levels are 0-15, Aj's last AFP test was 30.

We have taken Aj's AFP test for the last 4 weeks and his number have been 35-30-25-30. The raise could just be his little body doing its normal thing, BUT after everything that we just went through I wold prefer to overly cautious than sorry and so do the doctors. We will be checking his levels for the next 3 weeks as well as getting an ultra sound of his liver.

So all in all, I have to say that I think we had some wonderful Appointments and came out very hopeful that we can put this behind us and move on.

Thank you for everyone's prayers. I will make sure and let everyone know in the next months or so when we know for sure that we are out of the woods. But for now we are very happy with what we have in front of us. 

Pieces of the Puzzle

We are anxiously awaiting test results for AJ to truly know what is really going on.

This is what we know so far

1. he has a mature teratoma
2. His AFP levels have dropped 6 points since the surgery but are still high

So what does that mean? 

At this point I really just do not know. I am hoping with all my might that it means good things. From my own online research (which there is not much and I am not an expert) a Mature teratoma is usually a benign tumor (happy dance) but can quickly mutate and metastasize into a malignant tumor. however in my research I could not figure out if high AFP is common in this type of tumor. So the question that I keep asking my self over and over is  "Why is the AFP elevated?" Anyone!?! I just do not know. You might be asking your self what AfP is. It is a hormone that is released in your body and at different stages in your life can mean different things. In the situation that we are in, a high AFP tends to mean cancer. This is why originally the doctors though that AJ had a yolk sack tumor (which he may still have) with each test we learn a little bit more, at the same time each test seems to also be leaving us with more questions. I feel like I am putting together a puzzle without the box. we know he has something but what it is, we just do not know. We will still have to do another blood test, get the results from the chest x-ray as well as find out further information on his tumor. We are meeting with his oncologist on the 17 and I am hoping that they will help put all of these pieces together and give us a better picture about what is going on.

I want to say Thank You again for every ones support it has meant so much to our whole family

Aftermath

Today is the first day that I am really trying to get things back to normal after finding out about Aj's tumor. Life must go on and for me this is the only way that I can deal with what our future may hold. If I keep myself busy with my household chores, work and the baby I do not have time to think about the "what if's". Last night after everything was done and our company had left I got that knot in my stomach and my mind wandered to the "what if's". That is the scary place and I am desperatly trying to avoid going there. My imagination takes over and  I have to remind my self that there is just no point in worrying until we know more. Right? This is what I keep telling myself over and over: My baby will be okay. He is not sick. Look he is laughing and smiling right know. We are just making a big deal out of nothing. I keep repeating this every time I go to that "what if" place. I remind myself that there are families out there going through worse things than I am right now. I need to be strong for them, for my self and for my child. We will get through this, what ever this is.  I am strong, my family and friends make me even stronger. I am praying for all the families out there who are going through pain that is just so much worse than mine.

I am so blessed.

You cant hold Aj down

Next time you see Aj can you please remind him that he is supposed to be recovering from surgery!
All he wants to do is CRAWL! He has not quite figured it out yet, but boy is he determined. He is up on all fours rocking back and forth. He is scooting around the TV room pulling on all the cords in the room. He is doing everything and anything but RESTING! It just goes to show you how strong this little boy is. He has been smiling and laughing with us all day today. Now if I can just get him to take a nap

You are one in a Million

Tuesday May 31, 2001

I know that many of you have read that Aj has gone into surgery recently and that he has been diagnosed with a cancers tumor. Here is our Story.
 
Three Months Ago at Aj's six month check up I noticed that his Doctor checked his testicles. I had no idea why she did that or even what she was looking for, but none the less I went home that day and checked Aj's testicles. At that point I knew that his testicles were normal considering he got the all clear from his Doctor. A couple weeks later while changing Aj's diaper I checked his testicles again and noticed that one was a little larger than the other. I really did not think anything of it at the time but did make a subconscious Mommy mental note to check it again later. Later came and I checked and found that it was indeed getting bigger, so big it made me nervous and I called and scheduled his 9 month check up a couple weeks early.

 His doctor did notice that his left testicle was x4 bigger than the normal size and ordered an ultra sound for the following week. She reassured me that this would be nothing to lose sleep over and she would have been right, apparently there are quite a few things that can make a babies testicle enlarge.

However during our ultra sound the technician noticed right away that something was not right and called in two different doctors and they confirmed that Aj had a tumor on his testicle and it would have to be removed. Aaron and I were in shock and did not know how to handle the news. We took the baby to get his blood drawn later that week to have a better idea of what we were up against. Everything came back normal (whew) except for the AFP which came back twice the normal level and indicates that Aj's tumor could be malignant.

When we meet with Aj's urlogist he informed us that no matter how much he would like to save Aj's testicle he just felt that it would be best to take the whole thing out. He feared that the Tumor was a Yolk Sac Tumor which only happens 1.6 in a 1,000,000 case, what are the odds.  Gulp... my precious 8.5 month old little boy is going to lose his testicle... what! Aaron and I had a lot to think about, are we doing the right thing? Should we wait and get a second opinion? What if we wait and get a second opinion and that gives the cancer time to spread and then what? We decided that with the information that we had it would be in Aj's long term best interest to remove the testicle.

That brings us up to today's surgery. The Baby did great and was able to come straight home. Now we just have to wait for the results of the pathology, blood work and chest xray to come back. The test can come back in two ways: that we are all clear which would be great  or saying we may have a longer path in front of us.  I still have no idea what that path in tales. Time will only tell what will happen. No matter what, the prognosis for this type of cancer is 95% curable...happy dance time

Through this all, I have to consider myself blessed. I am blessed because I listened to Mommies instinct and found the tumor really early, I am blessed because I have a wonderful family who has surrounded me and my boys with there love and support. I have great friends who have prayed for Aj and  I am just so thankful. Today my baby is at home and asleep and I know that he is loved my so many people.

Thank you everyone for your Love and Support

XOXO
Sabline, Aaron and Aj