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My Diagnosis (Part-1)

One morning I woke up and was not feeling well and was limping on my left leg. My parents decided to take me in to the after hours clinic (it was Sunday, 8 am) to see what was wrong with me. While at the clinic they did the normal exams, ears, throat and listened to my lungs as well as 4 x-rays of my leg. After these tests the determination of my illness was "Just a Common Cold" and the physicians sent me home with a perscription for antibiotics and follow up instruction to see my "regular" pediatrician in 10 days if my condition continued. I then returned home where my condition continued to get worse throughout the day. My parents decided at 11:30 pm, enough was enough and took me to the emergency room at St. Lukes Reginal Medical Center where the same tests were done. However the finding were slightly different from the clinic I visited earlier. The tests came back and my iron level was out of whack, meaning I was anemic. Other then that all test results were fine. I was sent home in a splint on my leg (just in case, I had a fracture that was not showing up on the x-ray and with follow up instructions to see my regular peditriian. The very next morning, my mother contacted my peditrician and was able to get me into see him at 2:00 pm that day. After hours of testing, and blod drawn for labs we were abe to head home, the doctor said to my moher, "I will call you with the results" At 8:30 p pm that very night we recieved a phone call from the hospitals' oncology department asking my parents to bring me into the hospital for observation. At that very moment, my mothers face turned pale white. My mother packed a few things in a bag and off we went without knowing what the future holds for us. When we arrived to the hospital, we were admitted into the pediatric oncology department / floor.A physician entered our room,
and looked at my parents, introduced himself to them as well as myself and went on to explain what "they felt" was going on with me! Yes... cancer... The dreadful 5 letter word no one wants to hear, especially involving a small child who has (or had) his entire life ahead of them. |
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April 2009 We have completed Zachs Bone scan and will be scheduling the rest of his tests. We have been in contact with the doctors in New York and are awaiting Zach's next PLAN. Please pray for something GOOD for our little man. Update-Zachary will be admitted to the hospital on April 20th, 2009 for a stem cell harvest of his own cells. We need to insure we have plenty stem cells for for any treatment in the future as many clinical trials require the use of stem cells and he only has so many in the bank currently. Zachary will have to get shots of a medicine called GCSF which will boost his immune system high for the harvest. Update-Zachs bone scan showed no evidence of disease and his MRI & PET scan were clean with no evidence of disease. However, we still have to do the MIBG, CT's and Bone Marrow Aspirates and Biopsies which these tests are standard for Zachary! We need to get them done and results out because I am JUST a wreck right now! :o) Wish Zachary Luck.. Cross your fingers because were concerned about the 6 spots that were detected by MIBG in the past scans. These spots are less then a centimeter in size therefore there too small to call disease and too small to remove. So we wait and PRAY there NOT Tumor related! |
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March 2009 Zachary is scheduled for his scans, we had to cancel them a few times because we couldn;t cover the costs to be in New York, a few times but were hoping and praying something comes together and were able to get his tests done this time. He will have a Bone Scan (full body) PET scan (full body) MRI of Head and Brain CT Scan of Abdomen & Chest, MIBG scan whole body, Bone Marrow Biopsies and Bone Marrow Aspirates. Once after the results are in from the Bone Marrow Aspirates and Biopsys we will have to give him GCSF shots for 10 days to boost his immune system in hopes for Stem Cells. The doctors want to see if we can get more stem cells for future clinical trials that may require the use of them. In short, this may be good and bad as we don't know at this point however we are again staying strong and holding our heads up high for EVERYTHING to work out and putting everything in the lords hands. |
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February 2009 Zachary will be scheduled for his Routine Scans shortly. We are still waiting for the doctors to determine IF Zachary is NED (no evidence of disease) or Stable or if there are small tumors in his little tiny body. There was some question on his last few sets of scans because of the small size the doctors cannot determine EXACTLY what they are and what to do "If Anything" about these spots. Zachary is doing fine, happy and smiling still which is a BLESSING , one we are so very thankful for! Update-The doctors are unsure of what EXACTLY is going on with him, therefore they have told us we should wait and see on his next set of tests. As a mother, this is very hard for me to swallow... Sit and Wait, Sit and Wait. Somehow that is going to be a difficult thing to do. We know the doctors are doing all they can so we will Sit and Wait! |
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January 2009 I am taking Zachary in to the hospital for a Whole Body PET Scan. These are done under sedation for zachary as they tend to take awhile to scan. We will also be doing some more tests over the next week or two to see exactly where Zachary is with his cancer to further his treatment. There have been changes here and there in our lives, mostly feelings and stress but all in all Zachary is still his Happy self. I will post results and updates as they come. PLEASE PRAY FOR ZACHARY!!!! Update- Zachs PET scan was normal , no disease was detected from his scan. |
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December, 2008 Update
Zachary is headed in for his HAMA Testing this week, we had a delay in the process however we are hoping things get back on track! Please Pray for NEGATIVE HAMA.
As we approach the end of our current Fundraiser we would like to THANK everyone who participated and made it a huge success thus far, please know we ae very thankful to have you all in our lives and HOPE none of you EVER have to experience the difficulties, trials, tears and pain we have gone through with this Cancer Battle!
Zachary is Happy currently, enjoying life! We put up our Christmas tree and he LOVES it, he sits by the tree at random times of the day and say, "Mommy, "Christmas is comming." Then he gets up and RUNS as fast as he can to the window SCREAMING... No, No, No... Santa is not HERE YET Dillon! It is a beautiful thing to see him running around and full of life right now because at any moment things could turn for the worse. We LIVE Every day, one day at a time with no HIGH expectations because.. well we just can't right now! However Our Hope & Faith remain which has def. gotten us through these past two years!
MERRY CHRISTMAS,
The Yost Family
Shane, Amber, Miranda, Dillon & ZACHIE :) |
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November, 2008 Update
HAVE A HEALTHY, SAFE AND WONDERFUL THANKSGIVING BE SAFE IN YOUR TRAVELS
UPDATE- Zachany and Amber may possibly heading to NY to visit some friends and help with a NATIONAL COOKIE FUNDRAISER that is currently going on. Were hoping to get our story on INSIDE EDITION to help raise awareness of Neuroblastoma. If you haven't seen Zachs site in detail, be sure to look around on all pages and scroll down, there is a great video on the supporters page.
UPDATE- We will be on our way BACK to the doctors to draw a HAMA test to see if Zachary is READY for 3F8 antibodies. Please PRAY for HIM as HE really NEEDS to be NEGATIVE to START this Trial.
UPDATE- Zach will try to harvest stem cell again probably in a few weeks because he DOES NOT have alot of Stem Cells in the bank currently. This happens when children grow meaning the need for more stem cells becomes necessary. (At time of 1st harvest, zach was so small-remember?)
As reported in our last update, Zachary's findings on his scans were unclear. We recently took him to our local doctor at Georgetown University Hospital and were able to actually look at his MIBG films as the head doctor of the Necular Medicine there explained to me step by step which REALLY helped me understand MORE of what is going on inside Zachary's tiny body.
So here goes... It turns out there are a total of 8 spots that are "questionable". When I say questionable its because the spots are not "clear" meaning they are very "faint" on the MIBG film. The doctors are unsure as to what they are "seeing" "if anything". So we sit back and "HOPE" they are "nothing"! Time will tell! There are 3 of the 8 spots that are possible lymphnodes however these spots are still too small to call disease.
Zachary is now being treated for a sinus infection, however he is doing well and we are hopeful he will continue to do well because he is a "FIRE BALL" of energy full of Happiness! We are still waiting for the Aspirates and Urine Test results to come back. |
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October, 2008 Update
MIBG Findings and Impressions w. Physicans Consult
Zachary is in New York and has had all of his routine scans. Previously the scans showed some uptake and MINOR progression in the right chest region. The physcians have not been able to determine what the "Spot" actually is because it is so very small.
However, we are in a "unique" situation after this set of scan findings. It seems his situation is a bit different, so please bare with me. :o)
Zachary's tumor originaly (11/06) was non-cancerous but another tumor grew out of the original tumor which was cancerous. This leaving my situation "unique" The physicians are a bit worried that the spot in my chest which currently continues to lite up on MIBG is disease however on the other side of the coin they are thinking it could be a dye deposit that has simply settled there in one spot! (keep in mind it's always the same spot)There has been mention of the T1 spin area as being possible uptake however again there not sure. This time they noted a small area on the T1 & T2 spine area and again there not sure what to think and or do!
The physicians stated they can not justify any high dose chemotherapy to treat the spots on PAPER, however they feel chemotherapy should be an option to see if the spots react and are vanquished but unfortunately they cannot do anything to treat the 3 spots they are noting in the impressions because they can not justify a stopping point for the Chemotherapy, nor so they want to treat Zachary with Chemotherapy if they do not need to! It is a definite "unfair situation" as we know and there if no fault on the physicians because they are doing everything they can for Zachary and will continue to do so!
Basically, in short the physicans are in thought that Zachary's spots are disease with a 50/50 chance of the spots going either way, meaning nothing to worry about or disease. We cannot do anything but WAIT and see. We are in LIMBO. We need to sit and WAIT, and HOPE the spots are not disease at this stage. Zachary cannot do 3F8 antibody therapy because the Retuximab Trial he did in July made his HAMA sky rocket again, unfortunately! So we sit and wait until our next set of scans to see what our future holds for Zachary! Is he disease free, has he ever been disease free, will he remain in good standings with his disease, these are the questions we ask ourselves EVERY DAY and EVERY NIGHT!
Good news on the MRI Zachary had, nothing was there, free of disease in the head and brain, when compared to MRI done in October of 2007. We are thankful for that!
Urine has not come back yet.
Bone Marrow Aspirates are Pending
Bone Marrow Biopsies are Negative
Zachary continues to be upbeat and full of life, happy and smiling which at this point and time in his life is the only thing I can ask for because I truly believe "Mind over Matter" staying happy and smiling is truly the BEST medicine of all! We are in New York still awaiting his CD34 blood number to see wether we will do a Stem Cell Harvest of not.
My personal thoughts on this all are mixed, I feel Zachary does not have disease and he will be fine however I feel there is a bomb ticking waiting to explode! So again I sit in New York worried and stressed. Will we EVER be able to let our guard down even a tiny bit? I really don't think so...
Please continue to pray for Zachary, as he is classified as being NED on paper however the the physicians are thinking he will relapse but they are unsure as to when which makes me SICK and DEPRESSED because I don't know, we have no definitive answers and the reason being is the physicians really don't know themselves what Zachary's body will produce let alone when or if.... |
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