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Thursday, February 12, 2009 11:27 AM CST

5 YEARS CANCER FREE! Tayyib's checkup went great and he got another clean bill of health. Dr McManus' nurse Danine even got us in early to hear the test results so we could spend the afternoon shopping for a new Wii game in honor of this great event. Tayyib will no longer need to have a chest x-ray as part of his yearly appointments at Marshfield Clinic. I had a really good talk with Dr McManus about the benefits vs the risks of continuing multiple tests since he has reached a milestone. What we ended up deciding is that Tayyib will continue to have blood, urine, ultrasound and echo cardiograms on an annual basis but we will not pursue anything more invasive unless he has some symptoms we need to investigate. The benefit of being absolutely sure he is cancer free doesn't outweigh the long term benefit that he will not have more build up of toxins in his system that could lead to a secondary cancer.

Tayyib still hates having blood drawn but was very proud of himself that he didn't cry after the technician told him that she had seen teenagers who would cry and throw fits getting their blood drawn.

We are once again involved in St. Baldrick's Day taking place at the Stoney Creek Inn in Rothschild, WI on Sunday, April 5, 2009. If you haven't seen the event before it is very fun and entertaining. Over 100 people have their heads shaved bald to raise money to fund childhood cancer research. Our goals is to raise $57,500 this year. Check out the web site at: http://www.stbaldricks.org/#

Take care! and Happy Day.

Laura

Wednesday, February 6, 2008

Yesterday was Tayyib's annual check up. It was the first yearly exam and tests. All other appointments had been at 1, 2, and then 6 month intervals until this one.

He is now almost 4 years cancer free! Yahoo! With this type of cancer (CSSK) the highest rate of reoccurence is within the first 3 years so we are beginning to breath a little easier. He still has a chance of reoccurence until he's into his teens but what great news for now.

This last weekend my little kindergarten lost his first tooth. The tooth fairy came and stole the tooth and gave him $1.00 bill that he stuffed right into his mickey mouse bank. He is saving for a new Playstation game although mom makes him put half of the money into his savings account as well.

This past November Tarrik, Tayyib's younger brother turned 4 years old in the fall he will start 4 year old kindergarten at the YMCA. My boys are growing up so fast.

If you haven't already placed St. Baldrick's Day on your calendar please do so now. It's April 27, 2008, Tayyib's 6th birthday. The event this year is scheduled to be in Rothschild at the Stoney Creek Inn. This event raises funds for childhood cancer research each year by folks having their hair shaved off BALD. Tayyib was one of the children honored at the 2nd event when it was held in Stevens Point 4 years ago and since then we have hosted this in Wisconsin Rapids for 2 year, Athens for one year and Stevens point for 2 years. So this is the 6th annual event in the Central Wisconsin area.

We hope to see you there.

Laura

Monday, March 26, 2007

Hi Again,

Well Tayyib passed his 6 month check up in February with flying colors! We are now on to yearly checkups for him. The family went to Florida in January as part of Tayyib's Make-A-Wish. We had an excellent time! I've updated the pictures on the sight with some of the pictures from the trip. In April Tayyib will have his orientation to kindergarten. He also turns 5 years old. No longer my little baby.

Hope everyone is healthy and doing well.

Tuesday, February 21, 2006

Tayyib had his 2 year cancer free check-up and he passed with flying colors. Every test (blood, urine, ultrasound, and x-ray) came back clean and clear :) What a wonderful feeling.

Tayyib's only complaint for the day was that he had to have his arm pinched (Blood taken). As soon as he saw the room - he started the kicking and crying and then the wet noodle routine. It helped when I explained that this would be the only bad part of the day and it would only last for a few seconds.

He also thought the highlight of the day was peeing into the cup. Now remember that the last time he did this was 6 months ago and he couldn't make anything happen on command... So this was a major accomplishment :)

Thanks for all the warm wishes and we will see you once again in August for his next check-up. Until then enjoy life !

Wednesday, August 31, 2005

Tayyib had his checkup at Marshfield yesterday. He had to fast until 10:30am when he had his ultrasound of his tummy done. All his tests came back clear!:) We were so happy.

We now move to every 6 months for his check-ups. It's great in concept but it is also so scary to think we will not have that reassurance that his cancer has not returned for a longer timeframe now.

My boy is no longer a baby. He's 38 inches tall and almost 34 pounds. So we will not be updating until Fenruary 2007. Just a couple months before he turns 4 years old. See ya!

Wednesday, March 16, 2005

Tayyib had his one year cancer free check-up yesterday and he passed it with flying colors. All of his labs, ultrasound and chest x-ray came back negative...which is just what we want it to be...

Friday is the St. Baldrick's Day Celebration in Stevens Point. That is where people (70 to be exact) will have their hair shaven off in order to raise money to fund research to battle childhood cancer. If you're in the area, stop on by it's from 6- 10pm at the UWSP campus, University Center.

Tayyib's next check-up in in three months so we will once again make an update after that appointment.:)

Tuesday, December 21, 2004

Today was Tayyib's 9 month cancer free checkup. It went super. He is completely healthy and we will not have another appointment until March 2005 when it will be his 1 year anniversary of being declared cancer free!

See you then...

Friday, September 17, 2004

Today was Tayyib's 6 month cancer free check up. He wasn't able to eat anything before the appointment since they were planning on placing him under sedation again to get the test results. This was a large appointment day with them taking a cat-scan of his chest and abdomen, running his blood counts and seeing two seperate doctors.

Everything came back perfect. His blood counts are still on the low side, but within the normal range. One concern that was raised was that the light sedation that they have been giving him isn't working well, so in the future when they need him to lay completely still they might need to sedate him deeply. Hopefully the next time he needs to have major tests he will be old enough to lay still by himself. With the light sedation he acts like a drunken sailor but an cranky one that doesn't want to sleep.

We had to take Tarrik with us as well to this visit since he developed a touch of the flu on Thursday. Usually we leave him at daycare and take Tayyib over by himself. This was a major problem since taking care of Tayyib with tests gets us busy but when you add the second one in the mix if just didn't work well, even with both Ahmet and I at the hospital.

Next appointment moves to three months away now. Yahoo!

Wednesday, July 21, 2004

Tayyib had his four month checkup on Tuesday, July 13, 2004. All of his blood counts and scans came back great! He is doing super and is a "normal" little boy once again. Lately he has been trying to hold his little brother back a little. Tarrik is starting to crawl and getting into Tayyib's stuff.... Kids!

Today is Tayyib's one year anniversary from his surgery to remove the tumor and his left kidney. I can't believe what a year difference makes to our lives. Hope all is well with each and everyone of you.

Thursday, May 6, 2004

Friday, May 7, 2004 Tayyib goes in for his two month cancer free checkup. Tonight he is to stay up late. Have solids and milk until 2:30am and can have clear liquids until 6:30am. We need to report for 8:00am to Marshfield Hospital at which time the will need to start an IV line and prepare to put him to sleep for the scans of his abdomen, chest and pelvis.

We meet with his Dr at 1pm for the results. I'm hopeful that everything is fine but there is always that chance that the cancer is back. We will update everyone when we hear the results.

Thursday, March 25, 2004

Tayyib had a blast at the St. Baldrick's event. He was a poster child and honoree at the event so he stayed for the entire event until 10pm. This was the longest he has stayed up in his lifetime. He was so tired going home that dad said he fell asleep in the van and didn't even wake up when he took him into the house and laid him in his crib.

The event had 30 local folks shaving their heads to raise funds for childhood cancer research. It raised over $21,000 dollars and our goal had been $10,000. My brother-in-law, Jerry who is a Wausau Fireman came fully dressed in his uniform and allowed children to have their pictures taken with him and "Sparky" the firehouse dog (Who was my sister, Sherry in drag.)

Tayyib has started back at the daycare part-time and will ask of April 5th be back full-time. His little brother, Tarrik will also be going full-time on that date since Ahmet's mom returns to Turkey this Friday, March 26th. She has been such a blessing through all this with Tayyib. I personally don't know what I would have done without her help and caring nature. I will miss her greatly, but I know she misses the family back in Ankara tons.

Tayyib's next checkup will be Friday, May 7th. He will be having a birthday party on April 11th and officially turning 2 on the 27th of April. Where has the last year gone?

Friday, March 5, 2004

Tayyib is in REMISSION!!! His Bone scan,CT scans, and Echocardiogram all came clear and normal which means he is in remission. They did see a few small spots on his lower left lung but they think this is the remainder of his cold from a couple weeks ago. We think he either had broncitis or pnuemonia from the RSV virus that he, I and Tarrik ended up with that sent Tarrik to the hospital for 3 days.

He will have his chest Hickman tube removed on Wednesday, March 10, 2004 at 8:00 am. Then two weeks later he will be back to "normal" baths and showers. :)

His next follow-up visits will be on a 2 month schedule until September 2004 when they move to every 3 months, then 4 months, then 6 months over the next 3 years.

His labs came back on the low side still and Dr. McManus said that they might stay low for up to 6 months yet. His white blood cells was 2.8 (Normal range of 6.0 - 17.5), Hemoglobin at 10. 4 (Normal range of 10.5 - 14.0), and platlets at 336,000 (Normal range of 150,000 - 450,000).

Monday, February 23, 2004

Tayyib is going to be honored at the 2004 St. Baldrick's Event in Stevens Point, WI at the University. The event is taking place on March 19, 2004 in the Laird Room of the University Center. It takes place from 6:00pm - 10:00pm. There will be food, a children's area, a band, beverages and the highlight of the event at least 20 area people getting their head shaved. They receive pledges which goes to the National Childhood Cancer Foundation to support research on childhood cancers. See the link below to view Tayyib's information. (When you get to the web site enter USA, Stevens Point, WI into the location of event field.)

http://www.stbaldricks.org/thecause_kids.asp#find

Tayyib is a perfect example of a child who has benefited from childhood cancer research. The type of cancer he has, clear cell sarcoma of the kidney, only 5 years ago had a 5 year survival rate of only 50 Today, with the addition of a new chemotherapy drug perscribed by research, that survival rate has increased to 80 To pledge money for this event feel free to either do this on line at the St. Baldrick's web site or come to the event and pledge at the event.

Hope to see you there.

Wednesday, February 11 - Sunday, February 22, 2004

Wednesday, February 11, 2004
Today we ran Tayyib into the Emergency Room of St. Michael’s Hospital in town. This was because he was running a fever of 102 and had a very bad cough and cold going on. We were afraid that he might have a serious infection in his lungs. The Dr. in the ER made us feel very foolish for bringing him in since he kept saying, “He has a cold.” Well when I explained that he was a cancer patient he at least had them draw blood and check for line infections and called Tayyib’s Oncology Doctor in Marshfield. Well after 5 hours in the ER we were sent home with a,” he will just have to let it run its course.”

Thursday, February 12, 2004
I get a phone call at Noon that his initial blood cultures from his tubes are growing an infection so I will need to run Tayyib to Marshfield for a major dose of antibiotics and also have his blood rerun with cultures. ANC is at 2500 and Hemoglobin is at 10.5. WBC is 2.5 and Platelets are at 200,000.
His labs have stayed high since his last one after ending the GCFS shots on February 9, 2004.

Friday – Sunday, February 13 – 15, 2004
Just waited to get the call the Tayyib needed to go into the hospital for more antibiotics. But the call never came. His labs came back fine so someone at the local hospital screwed up his blood cultures and got us all worried over nothing. Thank goodness.

Monday, February 16, 2004 – Sunday, February 22, 2004
Ahmet and I take Tarrik into see his Ped since he is having trouble breathing and keeping his formula down when he coughs so hard. We find out that he has RSV. This is very serious infection in infants but to adults and even Tayyib it looks and acts like the common cold. Which is probably what Tayyib had last week that we were so worried about and had him to ER about. Tayyib is much better now still coughing once in a while but he must have been coughing and sneezing on his little brother so Tarrik now has the infection. We end up in the hospital (St. Mike’s) for three days and then are released with him doing nebulizer treatments at home every 4 hours. Thank goodness he never needed oxygen in the hospital and kept down enough formula that he had not gotten dehydrated and needed an IV. He will go back the Ped to a check up now on Wednesday, February 25, 2004. If needed he will stay on the nebulizer treatments for another week following this next doctor's appointment.

Monday, February 2 - Thursday, February 5, 2004

Monday, February 2, 2004
Today was labs since it was 8 days post chemo. His counts came back at ANC = 4348, WBC = 4.7, Hemoglobin 7.9 and platelets at 142,000. Looks like sometime this week he will be needing a blood transfusion again with his hemoglobin dropping below an 8.0. We knew this coming last week when we checked out of the hospital since this has been his pattern all along the treatments.

Wednesday, February 4, 2004
Labs today were down to an ANC of 1278, WBC = 1.8, Platelets of 131,000 and Hemoglobin of 7.8. Tayyib is given a blood transfusion. Ahmet ran him over to the hospital and got him checked into the 3rd floor Peds. The nurses were all asking why he was back so soon. He had just left from his last chemo treatment a little over a week ago. When they found out it was just blood then, they were very happy for him.

Thursday, February 5, 2004
Tayyib’s hemoglobin count has rebounded nicely from the blood transfusion. He’s now at 10.4. His ANC is still on the low side and will probably not "bottom out" until this weekend. WBC and Platelets also got a boost from the blood transfusion (WBC = 3.7 and Platelets = 182,000). Tayyib still has to get the GCSF shots in his thigh until Sunday night. Since we need to make sure that his ANC has come back into a normal range before stopping the shots. He will once again have labs on Monday. This maybe his last time of getting labs drawn at St. Michael’s Cancer Center from his Hickman Catheter. I have scheduled for Tayyib to go back to Hometown Children's Center during the week of February 16 - 20. He will just go for three afternoons that week but that will be enough to start to get him re-socialized with kids his own age.

Monday, January 26 - , Thursday, January 29, 2004

Monday, January 26, 2004

Tayyib had labs drawn again today and if all comes back fine then he will begin his last chemotherapy session at the hospital! ANC comes in at 1200, enough to go ahead with chemo. Hemoglobin is at 9.5, platelets at 189,000 and White Blood Cells are 2.1.

Wednesday, January 28, 2004

Tonight is Tayyib's last chemo session. We are getting so excited about the prospects of him being back on the road to recovery and remission. Tommorrow they will run his labs to see if he will need blood before we leave the hospital. There is still a possiblity that he will need to have a blood transfusion next week if his counts go low. He has needed a transfusion each time that he has had chemo so we will just have to wait this out.

Thursday, January 29, 2004

The hospital Peds staff through an end of chemo party of Tayyib today. He got balloons, presents and a cake! Of course he was more interested in the toys than the food or the balloons but it was a nice way to celebrate the end of chemo! Our next appointments will be March 4th when Tayyib will have all his major scans again. If all come up clean he is officially in remission and will have his Hickman catheter removed in mid-March...

Friday, January 23, 2004

Had Labs run today and Tayyib's counts are still holding great! ANC = 6000, Platelets are at 179,000, WBC at 7.0 and Hemoglobin is 10.

Monday, January 12 - Monday, January 20, 2004

Monday, January 12, 2004
Today is day 9 of this cycle of chemo. Tayyib had labs on his blood run and he is still holding in a good range. ANC is 3100 and his Hemoglobin is 10.3. These numbers are really helped when he gets a blood transfusion late in his chemo treatment like this time. He doesn’t seem to bottom out as bad. Next labs are Thursday.

Thursday, January 15, 2004
Today should be Tayyib’s lowest point in this treatment cycle. ANC is only 56. WBC is at .7, Hemoglobin at 10.1 and Platelets are at 64,000. This is one of his lowest bottoms. The platelet counts are the ones we are the most concerned about now since Tayyib has begun to climb on things and has taken to sliding on his knees lately. One wrong bump could send us to the hospital for severe bleeding if when his counts are this low. Tayyib still has to take the GCSF shots every day after his chemo treatments until his counts rebound. He has started to yell, “NO! NO! NO!” at us when he sees us getting the shots ready. Poor baby. I’ll be just as glad as him once these things are done.

Monday, January 19, 2004
We are done with GCSF shots. Tayyib’s labs today came back super! ANC of 13,440 and WBC of 16.8. Hemoglobin at 9.9 and Platelets are at 153,000. We knew his counts had come back yesterday when he started to eat everything in sight! Once these treatments are finished I have a feeling Tayyib will once again bulk back up to his former self. Presently he is in the 95% for height but has dropped down to only the 10% for his weight. His baby brother at 2 months old is now half his weight. Tarrik could roll on him and just about pin him down. Next appointment is Monday, January 26th and if all comes back fine then he will be checked into the hospital for his last chemo treatment. We are trying to figure out how to celebrate this event! Maybe a DQ ice cream cake. Any ideas? Let us know…

Friday, January 2 - Friday, January 9, 2004

Monday, January 2, 2004
Tayyib and I went over to Marshfield Clinic together for his Doctor appointment, Blood tests, and CAT Scans done. If all is ok we will be checking into the hospital for his last 5–day chemo treatment also today. Ahmet had to work and Grandma is home with Tarrik so it’s just the two of us. Tayyib’s labs come back with an ANC of 1437 and hemoglobin at 8.9. CAT scans are done of the chest, abdomen and pelvis and all come back normal with no signs of any cancer. Tayyib has more blood cultures run to make sure that his line infection that he had over the holidays has completely cleared up so we can’t start chemo today. Doctor Nickerson sends us home and tells us to come back after the Packer game on Sunday. We will check right into the hospital since Tayyib will either start chemo that night or he will need more antibiotics if the infection is still present.

Sunday, January 4, 2004
Packer game was awesome! We won over the Seahawks in overtime! Tayyib and I packed up the van and drove over to the hospital again and checked into the 3W Peds unit at 5pm. Grandma is staying home with Tarrik since there are too many cases of flu and RSV on the Peds unit right now to expose him to these infections. The plan for the week is that I will be with Tayyib at the hospital from Sunday till Tuesday night. Ahmet will come and spend his day off work (Wed) with Tayyib in order to give me a break. I will then come back on Wednesday night and stay with Tayyib until Friday when we can check out. When we arrive we are told that Tayyib will start chemo tonight since his line infection has completely disappeared.

Monday, January 5, 2004
Tayyib has now entered the “terrible twos” at 20 months. He has seen that little brother, Tarrik cries and gets attention so he has started to whine and cry when he wants something. If you tell him no… look out… he throws himself to the floor and cries. If you try to pick him up he becomes a wet noodle in your arms. If he is really frustrated, he will even hit his head on the wall/floor or anything else that is handy in order to really get your attention. Today, he had two major meltdowns and one of them was in front of Doctor McManus who just laughed at how naughty Tayyib could be. He had only seen the angel side of him before this… Boy does he know better now. He got beaned with a toy when he came in to check on Tayyib today. Tayyib’s throwing arm is very strong and his aim is darn good. Maybe a future baseball pitcher, we shall have to see.

Tuesday, January 6, 2004
Tayyib’s blood counts come back and they are starting to decrease with the chemo treatments. Hemoglobin is at 8.2 and it looks like he will be getting a blood transfusion on Thursday before his last chemo treatment for this round. He ends up sleeping 12 hours that night and even took a 2 ½ hour nap. Over all it was a good day with only one melt down. It must have been the extra sleep.

Wednesday, January 7, 2004
There were only two of us in the Peds isolation unit today. Very quite up here in the unit all day and night. One of the night nurses said that they were sending nurses home because there were no patients on the floor. I guess this was a good thing since that means there were less sick kids. Because of the amount of fluids they are giving Tayyib he ends up wetting the bed clean threw each time he sleeps and naps. So we end up changing him at least three times a day.

Thursday, January 8, 2004
Tayyib’s blood labs come back that he is in need of a blood transfusion today. ANC is 1027, Hemoglobin of only 7.5, White Blood Cells a 1.3, and Platelets at 200,000. Tonight will be his last dose of chemo in this 5-day stay. We should be able to go home Friday. Next week will be labs at St. Michael’s Hospital in Stevens Point on Monday and Thursday. Tayyib’s last 3-day chemo treatment is scheduled for January 25-27, 2004. I will be ending my maternity leave next week and already have some meetings scheduled in January. Tayyib is still napping close to 3 hours each day and sleeping up to 12 hours a night. I think the cummulative effect of the chemo is really starting to show up in his energy level.

Friday, January 9, 2004
As expected we are released from the hospital by 12N today. Yahoo! The Doctor mentioned that once Tayyib is finished with his last chemo treatment he would have all the major tests (MRI, Bone scan, CAT Scans) rerun during the first week of March. With luck these will all come back completely clean and he will be considered to be in remission. Keep your fingers crossed.

Monday, December 22 - December 30, 2003

Monday, December 22, 2003
Tayyib had labs this morning. ANC is at 1786, Hemoglobin is at 8.3 and Platelets are running 141,000. When he gets up from his morning nap he is running a fever that gets higher and higher. It started at 100.8, then 100.9, then 101.4 and finally 102.2. We called the Doctor and he wants us to bring him into the clinic. They do a blood culture from both of his Hickman catheter lines and administer an antibiotic IV. We get to go home then and the doctor says he will call us with the results.

Tuesday, December 23, 2003
At 8am the Doctor calls that the blood culture is growing a bacterial strep infection so we need to bring him into the hospital ASAP to start regular antibiotics via his IV. His fever is still running around 100 degrees today. He woke up once during the night at 3am with a 102 fever. Looks like we will be in the hospital at least 2 - 3 days. This might end up delaying his next 5-day chemo treatment. We will have to see. Ahmet takes off work and he and I take Tayyib to the hospital. Grandma is going to stay home with Tarrik. Labs come back with an ANC of 4600, Hemoglobin of 8.6, Platelets at 161,000. He will still need a GCSF shot tonight in the hospital. They have put him on two antibiotics every 6 hours. One is a broad spectrum and the other is a specific type of antibiotic since they aren't sure what the specific type of infection is yet.

Wednesday, December 24, 2003
Ahmet went home last night since he had to work today. Once he is done he will come to the hospital to give me a break. Grandma will stay home this stay with Tarrik since there are many cases of Flu in the Peds unit this time of year. Tayyib's ANC come back at 16,000 today so no more GCSF shots for him this round. So far he has had only one temperature of 100.6 today. Still waiting on blood cultures to come back. They say with the holidays it might be until tomorrow before we get the results. Doctor McManus said that we might be able to go home with IV antibiotics if his fever continues to stay down.

Thursday, December 25, 2003
Santa came while we were sleeping last night. Even though we really don't celebrate this holiday, the hospital still put together a huge garbage bag of toys and gifts for Tayyib and Tarrik. Tayyib got a new snowsuit and homemade quilt. In addition he got a talking Barney, a Bert and Ernie motorcycle, and a tone of stuffed animals. Tarrik got rattles and educational toys appropriate to his young age. Tayyib loved ripping open the packages.

Blood Cultures came back today and he has a Strep infection in his white replacement line of his catheter. The Vancomycin antibiotic is what he needs to stay on and Doctor McManus said that we could go home with antibiotics that we can administer every 6 hours. We were released at 1:30pm and headed to my sister Sherry and Jerry's house in Wausau for a Holiday dinner. Tayyib has really missed playing with other children and loves to spend time with his cousin Hayden, Myles and Shelley's boy who is 5 years old. They ran around the house together all afternoon. Unfortunately, this was a little too much excitement for him and he ended up getting sick from to many meds and not enough food in his system. We gave him Zofran and he fell asleep on the way home in the van.

Friday, December 26, 2003
Tayyib has the diarrhea today. He is also running a low-grade fever of around 100 still. He is very fussy and crying a lot since he is not eating that well and needing Zofran to keep from vomiting with this antibiotic.

Saturday, December 27, 2003
Today mom is down with the flu. Now I'm wondering if Tayyib has a touch of this since he also had diarrhea yesterday and Tarrik was also very fussy and crying most of the afternoon like his stomach hurt.

Sunday, December 28, 2003
Today we were Packer Backers. We watched the Packers win the NFC division over the Vikings. What a game... Arizona and Vikings I mean. HEE! HEE! The Vikings lost in the last play of the game and we won the division.

Monday & Tuesday, December 29 - 30, 2003
Tayyib has been expanding his vocabulary this past week and today he said Zehra, my Muslim name that Grandma calls me all the time. In addition, he said Ahmet's first name, milk and Sut (Turkish for Milk), and Wa for water.

Friday, December 12 - Friday, December 19, 2003

Friday, December 12th
Tayyib ended up getting a blood transfusion after his first chemo treatment in the hospital to once again lift his counts and hemoglobin. He looks so pale and tired before the transfusion and then within a couple hours he is all spit and vinegar again. Just what we like to see. His ANC that day was 1300. WBC = 2.5, Hemoglobin only at 7.9, Platelets at 231,000.

Monday, December 15, 2003
Tayyib spent the weekend (Dec 12 – 15) in the hospital for his three-day chemo treatment. Today was his release day from the hospital and he gets so happy when he gets to be disconnected from the IV tubing. Ahmet and Grandma were the two care providers this time at the hospital and I mostly stayed home with Tarrik. Grandma and I drove the boys over to Marshfield on Friday for Tayyib's labs and echocardiogram, which he passed with flying colors. Later that day Ahmet drove over after work. Tarrik and I drove home that night around 8pm and spend the night at home. During each day we would drive over and visit everyone in the hospital and then leave after dinner to go home.

Tuesday, December 16
Tayyib starts his GCSF shots tonight. He needs Zofran, the anti-vomiting medicine every four hours yet. The 3-day chemo treatment has one drug, Doxyrubicin, that really makes him sicker than the rest of the drugs.

Friday, December 19
Today was day 7 post chemo labs for Tayyib. His came back at ANC = 7686, Hemoglobin at 9.0, Platelets at 141,000 and WBC at 8.4. He still needs Zofran at least once a day to stop from vomiting and his body is aching so Tylenol is a must also.

Friday, December 5, 2003

Well, it's been an eventful week. On Friday, November 28th Tayyib became a big brother to Tarrik Ahmet Duran Ciftci. He was born via a scheduled c-section at 8:09am weighing 8lbs. 4oz. and 20 1/4 inches long. About noon that day, Tayyib was up in my hospital room meeting his new brother. He smiled and pointed and patted him on the head and then ran around the room. Like Ahmet said he was ok with him at that point because he didn't understand that he was coming home with us in a few days. Ahmet took off this first week to help with Tayyib's transition and his acceptance of his litle brother. I'm so glad he did since I've been restricted from lifting and carrying and Tayyib is weighing in at 24lbs. A little heavier than what I'm suppose to be lifting and carrying after the c-section.

Tayyib came up two more times to visit his brother and mommy before we were released on Monday, December 1st. Tayyib's counts hit there lowest point on Sunday, November 30th, so when we came home on Monday he was on the upswing, which is just what we were hoping for in his counts.

Mondays numbers were: ANC of 198, Hemoglobin of 8.0, Platelets of 93,000. That first night the two boys took turns waking each other up about every two to three hours. First, Tarrik would cry for food then Tayyib would wake up and want to be held because his body was aching. About 3am, Tayyib wanted to come into our room and sleep in the big bed and see that his little brother was ok. They were both up together for about 1 hour before they both crashed again till morning.

Thursday, December 4th we got to stop the GCSF shots and all three of us had doctor appointments. Tayyib had labs done. His counts were getting back to "normal." (ANC = 28,000; Hemoglobin of 8.4; WBC = 39.8; Platelets of 193,000). Tarrik had his one week appointment and I had my c-section check.

Tayyib will have labs once more on Monday, December 8th to make sure his counts are holding out without the GCSF shots. Then on Friday, December 12, he goes for an Echocardiogram of his heart and an appointment with the Doctor before being admitted into the hospital for a 3-day chemo treatment. It's good to say that he only has three more treatments left as long as they don't find anything in these tests coming up over the next month and a half.

Wednesday, November 26, 2003

We finished Tayyib’s 5-day chemo treatment yesterday. He did very well with only a little gagging every once in a while during the treatments. He had to have a blood transfusion on Monday since his hemoglobin count was down to it’s lowest yet of only 7.1. Ahmet noticed that Tayyib has really lost his hair this chemo cycle. He only has a small patch of hair left on the top back of his head. All his eyebrows and most of his eyelashes are now gone. Even with that he is still my cute little boy with the great smile! Tonight we start giving him the GCSF shots (small insulin like shots) to increase his bone marrow production so that his counts stay at their low point for the shortest amount of time. Our next appointment for Labs will be on Monday, December 1, 2003 and in mid December he will have an Echocardiogram again along with his next 3 day chemo treatment.

This Friday, the day after Thanksgiving, Tayyib will become a big brother. I will be having my c-section in the morning and hopefully by early afternoon Tayyib and Grandma will come to see the newest addition to the family. We are naming him, Tarrik Ahmet Duran Ciftci. From the ultrasounds he looks a lot like his older brother… Bald and with a cute little nose. We can’t wait to actually meet this little man on Friday. Ahmet will have off for a week to help with the new baby and Tayyib’s transition from being the baby to being the big brother. We are hoping that he adjusts to the new baby well and doesn’t have any issues with jealousy.

Wednesday, November 12 - Friday, November 14, 2003

Wednesday, November 12, 2003
Today is day 12 after Tayyib’s 5-day chemo treatment. He should be on the upswing for his counts since day 10 is usually his low point. Blood Counts come in as expected with and ANC of 952, White Blood Cells at 2.8, Platelets at 124,000 and Hemoglobin hanging in at 8.4. We had to start giving Tayyib Zofran, the anti-nausea medicine today since he is gaggy. It seems that when his counts make radical changes upwards, he needs to have this medicine.

Thursday, November 13, 2003
Tayyib threw up in the middle of the night. We gave him more Zofran and just have to hope that he is not getting stomach flu. We are still giving the GCSF shots to him since Dr McManus wants to get his counts up to normal before stopping this small dose shots that increase his blood counts.

Friday, November 14, 2003
Tayyib’s labs come back great today! We get to stop the GCSF shots! ANC is 15,080. White Blood Cells are at 23.2, platelets are at 254,000 but Hemoglobin is still on the low side 8.3. This has been Tayyib’s pattern however. All his counts but the hemoglobin come back nice and then before the next Chemo treatment he has needed a blood transfusion. Our next stay in the hospital starts this Thursday, November 20, 2003. It’s a 5-day stay in the hospital and I’m not looking forward to this one. I’ve been placed on partial bed rest for my blood pressure and Ahmet will need to be working 4 out of 5 of these days so I think this will be a very hard stay in the hospital for Tayyib and Grandma who will need to be keeping up with Tayyib’s playfulness. We will be released on Tuesday, November 25, 2003, if all goes well, which is also the end of Ramadan, a holiday for Muslims. Two days later is Thanksgiving and then on Friday, November 28, 2003 we will be having our second son via c-section. As you can see the next 11 days is going to be a whirlwind of activity.

Friday, November 7, 2003 & Monday, November 10, 2003

Friday, November 7, 2003
Tayyib had his last dose of Vincristine today. He was weighed to be 23 pounds and 8 oz., the same as what he weighed when checked into the hospital last week. His ANC counts came back at 378 only. WBC is at .7, Hemoglobin is at 9.7 and his platelets are as 233,000.

Monday, November 10, 2003
Well Tayyib has started coughing at night so I’m not sure if he is starting to get a cold or a sore throat. My throat is getting sore again so i hope that I have not given him something from school. He hasn’t been running a temperature just coughing at night and when he sleeps. This weekend he woke up two or three times a night with body aches again. His counts must be hitting their low point. Sure enough…his blood counts just came in from the Doctor's office. ANC is only at 55. WBC is at .5 and Hemoglobin count has hit 8.4. His platelets are at 110,000. The next couple days we have to be careful and watch Tayyib for any high fevers. If all goes well he will have another lab draw on Wednesday at which time his counts should have started to rebound.

Friday, October 31, 2003 – Tuesday, November 4, 2003

Friday, October 31, 2003
Tayyib has been running a low-grade fever of around 99.5 degrees on and off most of this week. Not sure why, but since we are going to the hospital today for Labs and an admission for a 3-day intensive chemo session, we will mention it to the doctors. Temperature is normal when he is checked in. ANC is 1560, WBC is at 2.4, Hemoglobin is 8.2 and Platelets are 458,000. When we get into the hospital the kids are doing trick or treating for Halloween, but we elect to keep Tayyib from this activity since he is scared of people in costumes right now. The Child Life folks bring him a bag full of toys as his trick or treat present. He loved the glowing ghost light that has fiber optic strands coming off the lighted area. Dr McManus mentions that Tayyib’s Bactrum antibiotic only needs to be given on Saturday and Sundays now. First dose of chemo given at 3:30pm. He has 3 different chemo drugs today being given and then the other two days it will be just one chemo drug.

Saturday, November 1, 2003
Hemoglobin is now as 7.7 so Tayyib is starting to look pale. We had a major blow today when we noticed that he had a hole in his Hickman catheter that feeds directly into one of his major blood vessels in his chest. The nurse who discovered it was flushing out his line and the liquid squirted me in the face. She got really flustered and so we knew this was not a good thing to happen. At one point the staff had told us that if there was problems with the Hickman that he might need another surgery to remove the damaged one and place a new one in his chest. The nurse discovered that there was a repair kit for this kind of thing and within an hour they had cut off his defective existing line and glued a new one on in its place. It could not be used for at least 6 hours and had to be immobilized for 48 hours by being taped to a stick. At one point the nurse who did the repair on his line said that she hadn’t seen a hole in a Hickman line for over 3 years. Talk about Tayyib being the "rare magnet". Rare form of childhood cancer, and rare complications with his treatment… Statistically we really hit the jackpot.

Sunday, November 2, 2003
We got really concerned early Sunday morning when Tayyib developed a fever that ran from 101.5 to 104 degrees. They started Tayyib on 2 major doses of antibiotics every 8 hours and Tylenol to combat the fever. They drew blood and took a urine sample to see what type of infection he had that was causing the fever. His Hemoglobin was now down to 7.3 so they did a transfusion of blood on Sunday afternoon. ANC is at 1850, Platelets are at 415,000 and WBC is at 2.1. Tayyib is eating a ton of food today – fish, fries, tomatoes, spaghetti, ice cream and soda. It’s nice to see him really enjoying his food since so many days he is picky with his selection. After the blood runs through his new replacement line, it gets clogged, so they have to declog it with a heparin solution. It works and we are in business again for his last dose of chemo this round.

Monday, November 3, 2003
Dr McManus tell us we need to stay an extra day in the hospital since Tayyib was running a fever yesterday and they are concerned that he contracted a staph infection in his line when the replacement was done. The blood cultures and urine cultures for identifying any infections will not be back until Tuesday anyway so he wants us to stay the extra day. We are told that even though his replacement line is working presently that we need to understand that these replacement Hickman lines can clog and have to be replaced under surgery anyway. We are just praying now that he does well with his new line.

Tuesday, November 4, 2003
Tayyib is released today and we are told that he didn’t have a staph infection just a minor urine infection. Which is great news. The antibiotics that they gave him every eight hours should have been plenty to take care of the infection so we can go home and come back for Friday’s labs and last single dose of Vincristine chemo. We are now officially half way done with Tayyib’s chemo treatments!! YAHOO!!

Monday, October 27, 2003

Tayyib is 18 months today! I can’t believe he is so old already. It seems like just yesterday he was a newborn coming home from the hospital. He has his 3-day intensive chemo treatment this weekend over Halloween. He had a great time last night from 3 – 6pm seeing all the kids in the neighborhood come to our door dressed up for trick or treating.

Since his last hospital stay Tayyib has not been eating like his normal self. He’s much more picky and seems to eat best when sitting on Ahmet’s lap. Ahmet eats one bite and then gives Tayyib a bite. Tayyib is still having a low grade fever some parts of the day. It seems like mornings and early afternoons are his worse time for running a fever of 99.5 degrees. On Sunday he hit 100.6 degrees and I thought we might have to take him to the hospital since any fever of 100.6 degrees gotten twice in one hour we have to report to the doctor. We think he has a slight cold since his nose seems to be runny and his voice in the morning is a little hoarse. We will see how he does this week. I hope he feels better soon.

Ahmet and Grandma have started Ramadan fasting today. This is one more thing to add to our plans since eating and drinking during the day is not permitted. When we are in the hospital they will need to take a break together and go and eat when the sun goes down. I’m more concerned with getting them food before the sun comes up since the Ronald McDonald house doesn’t allow cooking before 7am and most restaurants do not open until at least 5am. We shall have to be inventive I guess. Tayyib will continue to eat as much and as often as he can since children do not start fasting until they are close to teenagers. I am also not fasting this year since being pregnant and having my high blood pressure issues. I will just make up this time at some other point in my life.

Thursday, October 23, 2003

Tayyib’s counts have gone back up. Thank Goodness. (ANC = 2856, WBC = 5.6, Hemo 9.2, and Platelets are at 83,000) He has been running a low grade fever for the past four days at 99.5 and today was the first day that this disappeared. He was up three times last night crying in his sleep from the body aches again with his counts changing so rapidly. We think the low grade fever was due to his very low counts and not an infection starting. We will give one more shot of GSF tonight in order to help keep his counts up since he had another small dose of chemo today while at the clinic in Marshfield.

His CAT Scan results came back normal. The one exception to this was that they noticed an additional lymph node in his left lung lobe that they had not seen in the earlier CAT Scan. All other lymph nodes decreased in size because of the chemo. We will need to keep an eye on this one lymph node to make sure when they do their next scan that it has not grown. The reason this causes some concern is because Tayyib’s kidney cancer had moved into his neighboring lymph node on his left side of the abdomen. Once lymph nodes are involved, it is fairly easy for the cancer to spread since we have lymph nodes throughout our bodies that are interconnected.

Tuesday, October 21, 2003

Tayyib is starting to lose his eyelashes. Over the weekend we noticed that when he rubs his eyes at least two to three eyelashes fall out onto his cheeks. He is starting to look like a chemo kid. (Bald, thin, and pale.) Monday is day 11 after his 5-day treatment and he is running a fever of 99.4. Not high enough to have us really worried yet. Tuesday we will be in Marshfield for labs and CAT Scan anyway so he will be looked at then.

Tayyib is not allowed to eat or drink anything non-clear after 7:30am on Tuesday. He can drink clear liquids until 11:30am since his sedation for the CAT Scan is scheduled for 1:30pm. My poor baby is so thirsty. On the ride to Marshfield he keeps pointing at his drink bag and crying that he is thirsty. We have to keep distracting him to other things in order to keep him from thinking about his thirst.

1:00pm they draw his labs and at 1:30pm he is in the sedation room. They mix the medicine with 7-UP and place it in a bottle for him to drink. The stinker throws the bottle across the room. (It’s not milk). So we pour the drink back into the can and he starts to drink it from there. Within 45 minutes he’s acting like a drunken sailor and as soon as we rock him he is out like a light.

CAT Scan only takes 20 minutes but Tayyib decides that he wants to nap till 4:30pm. The nurse has to splash his face with water to get him to wake up. We get his lab results back before leaving. They are low… And I mean really low. ANC of only 14. White Blood Cells at .7, Platelets are at 44,000. The only bright spots are that his hemoglobin is at 9.2 and the backup cells to fight infection called monocytes are at 56%, meaning that he hit rock bottom and is now in the building stage for white blood cells.

In the meantime, we have to watch his temperature to make sure it doesn’t go to 101 degrees or stay consistently at 100.5 or above, since this would be enough to land him in the hospital. With no resistance to infection he would have to be placed in the quarrantined area and watched to see if he is developing an infection. (Being confined to a hosptial room would not be fun since Tayyib loves to run around and play right now.)

The other precaution for Tayyib is making sure he doesn’t get into an accident now. Even a bloody nose could cause him to bleed to death since his platelets, the blood clotting cells, are so low. The nurse warned me that if his platelets continue to drop till Thursday, when he comes back for chemo and labs, that he might need a transfusion of platelets.

Thursday, October 9, 2003 - Thursday, October 16, 2003

Thursday, October 9, 2003
We started our 5-day chemo treatment today. Labs and Dr appointment were at 9am and 9:30am. (I made the appointment very early in case we had to have some sort of transfusion before starting his chemo. Last time this fact set the chemo treatment back into the late night and early morning and it was very hard on everyone.) I’m glad I did this since his counts came back ok, except for his hemoglobin, which was low. (ANC=1175, WBC = 2.5, Platelets = 336,000, and Hemoglobin at 7.7). So he was ordered to have a blood transfusion before getting started with chemo. The transfusion takes 3 hours and what with the prep time and then flush time in the tubes he finally got started with chemo at 5pm and ended each night at 12:00 am.

Friday, October 10, 2003
Tayyib has started to gag when you try to give him milk. The past times with these intensive chemo treatments, he hasn’t ate really well but continued to drink his milk constantly. I’m hopeful that the IV and sprite and water will be enough to keep him hydrated and nourished. We got flowers, a fruit basket and a teddy bear from the university students who are in the Student Government Association today. What a nice surprise!

Ahmet is working this weekend so Grandma and I are covering most of the time Tayyib is in hospital. He has taken to racing down the corridors of 3W Peds and unfortunately I can’t keep up with him and his IV stand so Grandma has taken to running down the hallways with him. He’s a real stinker. He likes to go to the Coke machine and put money in and push the buttons in order to get a pop. When he is walking the halls he will point to the direction that he wants to go in.. either for the toys, the fish tank or the Coke machine.

Saturday, October 11, 2003
ANC today is 672. White blood cells are at 1.6 and platelets are at 227,000. His hemoglobin is now 9.2. He has started to eat weird foods during this stay. My sister, Sherry and her husband made venison beef jerky and Tayyib loves this stuff. In addition, he is eating burritos from Taco Bell and greasy French fries, fish and coleslaw. They say that chemo can change your appetite and boy can we see that happening this time.

Sunday, October 12, 2003
They found a trace of blood in Tayyib’s urine again so they had to collect a sample and send it to the lab for more tests. Everything came back fine. This visit Tayyib’s face is a little puffy since they increased his IV fluids to avoid this blood in the urine issue. Seems like it’s not working so they lowered the IV amount.

Monday, October 13, 2003
Tayyib’s hemoglobin counts are on the decrease again. We will know if he needs another blood transfusion tomorrow when they draw blood in the morning before we are released.

Tuesday, October 14, 2003
Well Tayyib needs to have another transfusion of blood today before going home. I am going to work and Ahmet has off so he will be staying with Tayyib and Grandma until he is released from the hospital. Hemoglobin is at 7.7 and WBC are at 2.0. Platelets are at 150,000. Tayyib is released at 2pm and arrives home at 3pm. It’s so good to be home!

Wednesday, October 15, 2003
Day 6 from start of this 5-day chemo treatment. Tayyib is back to drinking milk! Not eating the best yet but that is his usual pattern to have a couple days after his chemo treatments to get back to normal. Started GSF shots tonight to help increase his WBC counts since they usually take their dive at 10 to 12 days past the first chemo.

Thursday, October 16, 2003
Tayyib had his small dose of Vincristine chemo today in Marshfield. He seems so tired today but his counts came back in the good range (almost normal). ANC = 7296, WBC = 7.6, Hemoglobin at 12.1. The only low count was his platelets at 172,000.

Monday, October 6, 2003

On Saturday, Tayyib didn't eat well since he had his dose of Vincristine on Friday. We had to also give him his Colace for constipation. He has started to get diaper rashes from the chemo as well. It's so hard to know that this medicine is helping him but at the same time to see all these side effects taking place in our little boy.

Sunday, October 5th, Tayyib is eating everything in sight today. At least 15 grapes, 30 pieces of Turkish Monta (Ravioli), cheese popcorn, rice, chips, etc... Gave Colace again today to make sure he is having an easy time of it pooping. Took at trip to Belts since they are closing in a week. Tayyib got to eat a turtle... Yummy!

Well,I can offically report that Tayyib has slept 3 nights in a row without a single wake up. Not sure if he has reached the age where this is normal, or if it just means that his hemoglobin is that low that he too tired at night to wake up. We shall have to see if this continues.

Friday, October 3, 2003

Today Ahmet and Grandma took Tayyib over to Marshfield for a blood draw and small dose of Vincristine chemo. His counts come back all good (ANC= 15,387 - normal person range, WBC = 22.3 and Platelets are at 501,000), except for his Hemoglobin which is still low 8.3. The Doctor says that since his WBC counts are so high he can actually feel poopy from them being too high so his crying at night and body aches could have been due to this and not the opposite, with counts too low the past couple days.

We scheduled his 5-day chemo treatment for next Thursday through Monday. If it is like last time he might need to have a blood transfusion before he can get his chemo so we have scheduled the initial blood draw at 9am.

Wednesday, October 1, 2003

Tayyib isn’t eating the best today. Grandma has made him a Turkish dish, similar to ravioli, that he loves in order to get him to eat more today. Yesterday he ate mostly chips all day long. Not the most healthy of diets, but at least he is eating something. At his last Doctor appointment he had lost a half a pound. We need to get him to eat more and gain weight rather than losing since he's already very skinny for this height. Day 12 past his last 3-day chemo treatment. I’m expecting today to be his rock bottom day for blood counts if he is following the same pattern as his last chemo treatment.

Tayyib had a really rough night. Slept from 7:30pm – 11:30pm straight and then at 11:30pm started to whimper in his sleep. Would wake up every 10 minutes crying from the aches and pains. We gave Tylenol but it took 2 hours before he fell back to sleep in my arms in the rocker/recliner in his room. Slept that way until 3am and then placed him in his crib again and he slept until 7am. I can completely understand wanting to be babied when not feeling well. I just wish there was more Ahmet and I could do for him. It’s so hard to see your child in pain and know that you can only be there for them, but that you can’t make the pain go away.

Tuesday, September 30, 2003

Tayyib is looking very pale now. I can tell that his counts are on the decline. Ahmet and Grandma run Tayyib to St. Michael’s for his lab draw this morning. As expected his numbers are starting to decline. ANC is only 777. WBC is at 2.1 and Hemoglobin is at 8.1. Platelets are 172,000. Tayyib was up 4 times last night. The poor baby. Each time I get up with him I try to massage his legs and arms in order to lessen the body aches that come with his counts taking a dive.

Next appointment is Friday at Marshfield for his lab counts and in addition if the levels are in the ok range they will give his Vincristine chemo dose. So far we have not been delayed with Tayyib’s treatments due to illness or his counts being to low. Hopefully this continues.

Sunday, September 28, 2003

Tayyib is running a low-grade fever today. 99.4 degrees, not high enough to make a run to the hospital but high enough for us to have to take his temperature every half an hour just in case he would have a spike. Still giving Colace for his constipation and have also started giving him Zofran once a day since he is getting gaggy in the mornings.

He has started to chase the dogs around the kitchen with the utensils he pulls out of the kitchen cabinets. He thinks it’s great fun but the dogs being older just bark at him and run away. One of these days he’s going to get fast enough to catch them since they are getting slower with age.

Saturday, September 27, 2003

Tayyib is on Day 8 passed the last 3-day chemo treatment and we are still waiting to see when his blood counts will hit rock bottom. Since last time with the 5-day treatment it was at Day 12 we are thinking this could be the case once again, but we will not know until we get through this cycle. Had to fill the prescription for Colace today. This is an anti-constipation medicine and Tayyib is starting to have problems with this area. Once the Colace kicks in he is back to a normal pooping machine.

Nights are getting harder since Tayyib’s counts are once again dropping. He has at least 2–3 wake-ups per night wanting to be held and rocked. Still giving the GSF shots and will probably have to continue this until Day 12 as well since this was when his numbers rebounded last treatment.

Friday, September 26, 2003

Back to Marshfield Clinic today for Ahmet, Grandma and Tayyib. Labs need to be drawn and if Tayyib’s in the ok range he will have another dose of Vincristine today. ANC is 1725. Platelets are at 142,000, WBC is at 2.5 and Hemoglobin at 9.1. Will need to have another lab draw on Tuesday of next week in Stevens Point.

Tuesday, September 23, 2003

Once again, I’m home from work with my cold and Grandma is caring for Tayyib. He is so fun at this age. He imitates anything you do and sometimes say. Dr. Nickerson, the Ped Oncologist at Marshfield said that he is developmental a little ahead. Imitation usually doesn’t happen till children are closer to two years old. He was so impressed over the weekend that Tayyib would open his mouth to let him shine the light and see his throat.

He likes to dance to the music on the radio now. He will go over to the stereo and turn on the CD player with either Shania Twain or Mr. Billy from the Benefit. He loves the bubble song on Mr. Billy’s CD. In addition, Tayyib has taken a liking to calling the dogs by making kissing sounds and patting his thigh with his right hand. Grandma has been teaching him these things and everyday I’m so amazed that he is such a bright kid.

Monday, September 22, 2003

Released from hospital at 12:30pm. Had to get prescription for GSF shots filled and Zofran for home before we left so we didn’t get home until 2pm. My cold is horrible and I’m staying home from work to rest and hopefully let my swollen legs and fingers go down.

I’m quarantining myself in the bedroom so Tayyib can have the run of the house with Grandma. He still can hear me coughing and sneezing so every so often I hear him knocking on the bedroom door wanting to see MaMa. He is so cute.

Sunday, September 21, 2003

Grandma and I sleep in the RMH and Ahmet continues to take the night watch with Tayyib. He’s so wonderful. Tonight will be his last dose of chemo for this session. He has not gotten sick at all during this hospital stay. Thank you Zofran. Tayyib’s counts today are: ANC = 2520. Hemoglobin at 9.9. WBC are at 4.0 and his platelets are at 254,000.

Saturday, September 20, 2003

Tayyib is still eating well and wants to go out of the room and play in the playrooms of the hospital. I have a full blown cold so am trying to stay away from Tayyib as much as possible. His Dr. looks at my throat and says it’s just a virus but that I should not kiss, breathe or cough on Tayyib if possible to try to not give him this thing.

Tayyib had a trace of blood in his urine again today. So they had to take a urine sample and send it to the lab for analysis. Thankfully it came back fine. One of the drugs can irritate the bladder so they have us put cotton balls in his diapers that they test every four hours for traces of blood.

Friday, September 19, 2003

Today Tayyib will have an abdominal ultrasound and a chest x-ray in order to see that the cancer has not started to come back anywhere in his body. After this is done in the morning, he will see Dr McManus and be admitted into the hospital for a 3-day chemo treatment. Ahmet has off this weekend so we will all be here together once he gets off work Friday late afternoon. Casey A, a student at UWSP and teacher with Tayyib’s daycare (Hometown Children’s Center) is going to dog sit this weekend so we don’t have to worry about them either.

First, we reported to Peds in the clinic and have his blood drawn for lab tests. Then we were off to his abdominal ultrasound. Had to wait for 1 hour to get in to have it done. Once done we flew over to X-ray and Grandma got to help hold him down while they took two chest x-rays of him. Then back to Peds in order to find out that his Hemoglobin was very low at 7.2. He would need a blood transfusion before he could have chemo today. ANC is good at 1543. WBC are at 2.5 and Platelets are at 273,000.

We went over to the hospital and got checked in and finally got the blood transfusion at 2pm. It takes 3 hours for this procedure and then some time to flush the lines, so wasn’t put on his two hours of hydration until 6pm and chemo didn’t get started until 8pm. Chemo ran all night till 3am. Not the best idea when your child is a light sleeper and wakes up with the beeping of the IV machine that feeds the chemo into his lines.

My throat is getting very sore and I’m afraid I’ve caught a cold from the 8000 students who have converged on UWSP this past month. We shall see tomorrow how I feel. We got a 2-bed room at RMH this time and so Grandma and I get to sleep in a normal bed tonight. Ahmet is on Tayyib duty in the hospital.

Tuesday, September 16, 2003

Took half a day off from work so that we could take Tayyib and Grandma shopping in Wausau at the mall. We had lunch together and Tayyib ran around the mall. He really is getting very mobile now and likes to go, go, go. We packed our clothes for this weekend’s 3-day hospital stay tonight since Ahmet and I both have the next two nights of late night meetings and work.

Monday, September 15, 2003

Tayyib had a good day with Grandma today, except for only napping 1 hour today. She said he gets really bad when Ahmet and I come home. Boy, oh boy, could I see that today. He refused to sit down and play in the living room with me when I got home from work. Normally he will sit in my lap and we can read books, and play but today he had to be held the whole time and I had to be standing. Didn’t want to sit at all today. I tried to put him to bed early at 6:30pm. He cried constantly for 30 minutes. We went down stairs and got a new bottle and he played in the living room for an hour and then when I took him upstairs at 7:30pm he was out like a light.

Sunday, September 14, 2003

Ahmet worked today and didn’t come home for lunch so Tayyib was a little bummed not to see BaBa (Turkish for daddy) at all today. He was still very tired. His eyes have almost a bluish, purple circle under them now.

Saturday, September 13, 2003

Today is Tayyib’s benefit at the university. His counts were good for disease fighting but his red blood cell count was very low. The guest of honor attended even though he was a little tired and whiney. The benefit raised a wonderful amount from the silent auction for his account. The kids loved Gary Shulfer’s chemistry demo and Mr. Billy got everyone rocking. There were balloons for the kids and also face painting to keep the little ones entertained. Tayyib’s daycare did an excellent job of organizing this event to benefit him. Thanks everyone at Hometown Children’s Center and at the University who helped with the planning.

Friday, September 12, 2003

Tayyib is very tired today. You can see just how pale he is by looking at the little dark circles under his eyes. I feel so sad when I see him so pale and tired. He will play hard for a while and then come and sit in my lap to rest. His hemoglobin must be solow with such tiredness.

Thursday, September 11, 2003

Ahmet and Grandma took Tayyib over to Marshfield for his small dose of Vincristine chemo and lab counts today. We are excited to see that his counts have really jumped even in one day. ANC is now 10,368 – within a normal range. Platelets are 183,000, white blood cells at 16.2 but hemoglobin is lower at 7.7. Still not low enough for them to order a blood transfusion, but he is very pale and whiney with tiredness. Poor baby!

Wednesday, September 10, 2003

Lab counts came back good today. ANC is 6095. Hemoglobin at only 8.0. Platelets are at 143,000 and white blood cells are at 11.5. Brenda, the Oncology Nurse said the GSF shots are doing what they are suppose to and we don’t have to give shots any more, since his counts have started to swing back up. It’s amazing that these little shots of GSF can have such a great effect on rebuilding the blood counts.

Tuesday, September 9, 2003

Tayyib is having rough nights. Not sure if it’s the low counts or his teething issues causing him to wake up 3 – 4 times a night. Maybe a combination of the two. The nurses had said that when your counts get so low some of the older children report that they get body aches really bad.

Monday, September 8, 2003

Lab draw at St. Michael’s today. ANC of only 40. Hemoglobin at 8.1 and platelets at 50,000. He doesn’t need a transfusion since his individual levels are ok but that ANC is really low. We think he is at rock bottom for his counts. And we have to watch him carefully for signs of fever, cold, chills with the count so low. He might be on the rebound now since his Monocytes are at 33% when normal is 1 – 12 and his White Blood Cell (WBC) count is .8 up from .5 on Friday. Normal range for WBC are 6.0 – 17.5. Will know on Wednesday with another Lab draw at St. Michael’s if his counts are rebounding.

Sunday, September 7, 2003

He didn’t eat most of the day today and then threw up around 5pm everything he had ate earlier. They had told us that every child is a little different with how they handle the low blood counts. Some get fevers and chills and some get sick. Soon after we cleaned him up he ate some chicken and rice and had Zofran to make sure this stayed down.

Saturday, September 6, 2003

Went to Belt’s for ice cream today. Tayyib loves ice cream. When he won’t eat anything else he still will eat it. He’s starting to bruise very easily from the GSF shots so I think his counts are continuing to drop.

Friday, September 5, 2003

Counts to be drawn at St. Michael’s oncology unit in Stevens Point and faxed to Marshfield Clinic today. ANC is only 145. Platelets at 99,000 and 8.9 for hemoglobin. Labs have to be drawn again on Monday to see where he is at in ANC. We need to watch for fever and chills in case he really bottoms out and needs to have a transfusion this weekend. Platelet counts in a normal person range from 150,000 – 450,000. These are necessary for normal clotting of the blood. When platelets are low there is a tendency to bleed longer than normal. If counts of platelets get really low a child’s activities have to be reduced since everyday activities can lead to bruises and uncontrollable bleeding. Usually a platelet transfusion will take place when the counts are around 20,000.

Wednesday, September 3, 2003

To the hospital today with Grandma and Tayyib. He has to have his counts drawn and if they are good he will have a dose of Vincristine today. This is just a “push” drug that they inject in about 30 seconds into his Hickman port. ANC is 1850 and hemoglobin is running 9.9 still. Platelets are down to 202,000, but he gets his dose of Vincristine. He officially weighs in at 23.8 lbs and is 33inches tall. This places him in the 95% of height and only the 25% for weight.

Tuesday, September 2, 2003

First day of work for the new school year for me. Ahmet had off so he and Grandma went to the cheese factory in Knowlton and got cheese and butter for the house. Tayyib enjoyed getting out of the house for a ride in the van to someplace other than the hospital.

We have to start giving him shots called GSF. It’s to help build his blood cells faster so his “bottom out” blood count time is the shortest it can be since he is most susceptible to infection at these times. The shots are just under the skin on his thigh and the needles are short insulin ones, but it is still hard to give these shots to him, even though we know that it’s for his best interest.

Monday, September 1, 2003

We are released from the hospital today at 10am. Yahoo! His counts have rebounded to an ANC of 1043 and hemoglobin in the 10.3 range (Normal people have a range between 10.5 – 14.0). So he is almost normal in this category today. Amazing how that blood transfusion can fix some thing so quickly. Dr warns us that his counts are going to take a dive again within 7 – 14 days of the chemo and he might need hospitalization if he catches a fever or infection. We have to watch him closely over the next two weeks. Tayyib never threw up once during his chemo. He has a rough time sleeping in the early morning but it could be due to his canine teeth coming in. Went to work for afternoon so that I can get some additional hours in as I know that I’ll be needing to use tons of sick leave and vacation on these chemo visits, yet I still want to have some time left for a maternity leave for the new baby.

Sunday, August 31, 2003

Tayyib gets a transfusion of blood today. His blood counts are very low. He has an ANC (absolute neutrophil count) of 493. Activities of families with children with cancer revolve around a child’s white count, specifically the ANC. The ANC provides an indication of a child’s ability to fight infection. The lower the ANC the more susceptible the child is to germs in the environment. Generally with a child on chemo, an ANC over 1000 provides the child with enough protective neutrophils to fight off exposure to infection due to bacteria and fungi.

A decrease of red blood cells is called anemia. Red blood cells (RBC) contain hemoglobin which carries oxygen around the body. When the count is decreased for RBC and hemoglobin, a child may look pale and feel fatigued, dizzy and short of breath. Transfusions of blood are usually ordered when the hemoglobin gets below 7.9 in the hospital. Tayyib’s hemoglobin count is only at 7.7 and because of this low count he looks pale and is a tired boy. Still wants to play however, but is a little more unstable on his feet today. Once the blood is tranfused his color comes back within a couple hours. Last round of chemo will be tonight for this 5-day visit.

Saturday, August 30, 2003

Tonight Ahmet works late so he will be staying at the house to sleep. Tayyib just kept looking at the door waiting for dad to arrive but he didn’t. Chemo went ok. The hardest part about this is he is walking now. The tubes are always getting in his way and he trips up. I’m so happy I bought some new outfits for him that have open snap bottoms and back snaps so the tubes can be run up and through his back opening. This way he doesn’t trip up when he walks. We still have to follow him everywhere since his balance is a little off and the tubes still dangle down in the back. One of Tayyib’s cotton balls in his diaper come back with blood in it so he had to have a bag put on to collect the urine so they can send it down for more tests. Everything came back fine however and we were very relieved. If things would have been off they would have needed to increase the Mesna amount to compensate for the bladder irritability that the chemo drugs can make happen.

Friday, August 29, 2003

Tayyib isn’t eating well now. Only drinking his bottles of milk. He is staying hydrated and has normal poop and pee functions. Chemo again from 5pm – 10pm. Dr will not up his schedule for the last two days in order for use to leave early since he said it will be too hard on Tayyib. Looks like we will not be released until Monday morning rather than Sunday.. Our 5-day stay will be a 6-day stay. Glad we packed more clothes. Ahmet worked today and then drove back over once he was done with work. I slept in the RMH. Grandma refuses to sleep over there by herself, hopefully we can get a room with 2 beds for our next stay, but we are at the mercy of the RMH staff and their demands from parents just like us for rooms.

Thursday, August 28, 2003

I went to work today while Ahmet had off and stayed in the hospital with Tayyib along with his mother. Got back to Marshfield after stopping by the house to take the garbage cans in and pick up mail. Ahmet slept in the RMH, while Grandma and I stayed in the hospital.

Wednesday, August 27, 2003

Called Ronald McDonald house and they don’t have any rooms open this morning. We will have to see if we can get a room once we are checked into the hospital. Had labs drawn at 10:30am and saw Dr McManus at 11am. Grandma, Tayyib and I went to the cafeteria and ate lunch before being admitted into the hospital. He ate fish and French fries. Got checked into the hospital and admitted by 1pm. Called RMH and they had a room but it was just a double bed not two beds. They got his IV started and had to have it run for two hours before starting chemo. They gave him Tylenol and Zofran at this time also. Chemo started at 5pm. First drug was Cyclophosphamide and it ran for 60 minutes. Then they administered Etoposide and it also ran for 60 minutes. Each of these had some Mesna mixed in to help protect his bladder and kidney functions. Then a full 3 hours of Mesna ran until 10pm. Every 4 hours they gave him Zofran and Tylenol and a small dose of Mesna. Ahmet came over after work and I slept in the RMC while he and Grandma stayed in the hospital room.

Tuesday, August 26, 2003

Ahmet and I worked today. Grandma took care of Tayyib. He’s being a normal little boy by walking around now and getting into everything. We are getting packed for the 5-day hospital stay. Not looking forward to it since I’m afraid he is going to be sick all the time with the chemo. We are packing a slew of clothes just in case. Myles, my brother, picked up the dogs today so we don’t have to worry about them during the hospital stay. Had to show him the meds that Bebek is on for her cough.

Saturday, August 23, 2003

A beautiful day weather-wise, but we stayed home and enjoyed being home. Today was Tayyib’s brat/hamburger sale at County Market put on by Hometown. We didn’t go out in public since his counts were on the low side.

Friday, August 22, 2003

Took Bebek, our red Pomeranian, to the vet since she has been coughing a barky cough for days. After a chest x-ray they decided it’s old age and gave us 5 drugs for her to take. She might need to take them for as long as she lives. Her larynx is getting constricted which is common in small dogs as they age. At least she doesn’t have an infection of some sort to give to Tayyib.

Thursday, August 21, 2003

His fever disappeared and he is eating again like normal. Hospital stay has been moved to Wednesday through Sunday due to lack of doctors over the Labor Day holiday in the hospital.

Wednesday, August 20, 2003

Tayyib is eating more today and playing with dad in the am and grandma in the afternoon. Very hot today so no going outside (95 degrees). Grandma and I changed his Hickman dressing and also flushed his lines together.

Tuesday, August 19, 2003

Tayyib had his Vincristine chemo dose today. Dad and Grandma took him over to Marshfield and he did ok. We gave Zofran before he left and continued this for the entire day and he wasn’t sick. In fact, he ate some food when he got home in the afternoon. Tayyib is very tired since his counts have continued to drop down and I rocked him to sleep at 7:30pm. Hospital stay for next week is scheduled for Tuesday through Saturday.

Saturday, August 16, 2003

Took a ride to Menards to see dad and to Shopko to pick up his refill on his meds. His first trip out in public since this all started.

Friday, August 15, 2003

Tayyib is eating once again. Not his normal amount but enough that we feel comfortable that the side effects are wearing off from the Vincristine.

Thursday, August 14, 2003

First run to Marshfield for blood counts without an appointment since Tayyib was up all night (every two hours) crying and wouldn’t eat anything only drinking stuff. His counts came back ok for a boy on chemo not low enough to warrant any hospitalization or transfusions.

Wednesday, August 13, 2003

1st day of no Radiation. Ahmet’s mom is home all day with Tayyib today. Have to see if he is eating ok now and popping well. No appointments with the doctors until next week Tuesday.

Tuesday, August 12, 2003

Went early for Bone Scan and it only took 10 minutes. I got to stay in the room and hold his hand while the machine took the pictures of his pelvis. Last day of radiation! YAHOO! Went home and gave him medicine but he didn’t eat really well for dinner. Up 3 times at night. Not sure if it’s his teething of molars doing it or maybe his jaw aches. Balance is off as he is trying to walk. All side effects of the Vincristine chemo drug.

Monday, August 11, 2003

Started with a Lab draw at 9:00am in the Clinic and had to go to Radiation in the hospital at 9:15am. Traveled to Peds, in the clinic, next and met with Dr Nickerson at 10am. Tayyib got weighed and had not gained or lost any weight. They drew up his chemo drug – Vincristine, and it was administered at 10:30am right in the clinic exam room. Went back to the hospital side for an 11am injection of the isotopes for the bone scan in the pm. Next went back to Pediatrics in the Clinic till 12N.

Tayyib was very cranky and crying (12N – 12:45pm) because of hunger, thirst and needing a nap. At 12:45pm he fell asleep so they were able to do the CAT scan of his head without sedating him. He woke up from his nap at 1:30pm and played in his hospital bed until 2pm when they had to knock him out for the bone scan. He fell asleep in my arms. Scan took 45 minutes and they couldn’t get his bladder to empty so we were asked to come back Tuesday am for a quick 10 minute picture of his pelvis before his last radiation treatment. He woke up and we got to feed him on the way home soft foods, banana, pudding, and 7UP. He ate a good dinner at night and slept ok. Seems like no side effects from getting knocked out today.

Saturday and Sunday, August 9 & 10, 2003

Had to give him Zofran 3 times on Saturday because of gagging and vomiting. Only once on Sunday. He still is eating good once the medicine kicks in to his system.

Thursday, August 7 & Friday, August 8, 2003

All tests are scheduled for Monday so Tayyib will have a long, tough day since he can’t eat after 5am or drink after 9am. The positive thing is that they will put him to sleep at 12N in order to due the afternoon tests. On Friday, they did the radiation at 9:15am and then did the echocardiograph of his heart without having to sedate him so one less test on Monday we have to go through. Yahoo!

Wednesday, August 6, 2003

I give Zofran before Tayyib, Grandma and I leave for Marshfield so Tayyib does not gag or throwing up all day. Brenda, the nurse for Tayyib’s Doctor stops down in radiation with news that we need to schedule a CAT scan of his head, a bone scan and an echocardiogram for next week. It’s suppose to be routine for them to use as a baseline for the future but it can see also if his cancer has spread to any other area of the body. Bone and brain are two common areas where it can spread to… If they come back positive for cancer, they will once again change Tayyib’s protocol and probably add more radiation.

Tuesday, August 5, 2003

Ahmet picks up prescription for Zofran when he takes Tayyib to Marshfield today for his radiation treatment. He starts to gag a little after the treatment but turns out to be fine all day long. He even slept on the way home from his appointment and ate some lunch and dinner later.

Monday, August 4, 2003

Ahmet’s mom, Behiye, stays home and rests while he and I take Tayyib over to Marshfield for his first chemo and radiation sessions. The schedule of chemo they give us is much more aggressive than even what they told me over the phone last Thursday. He needs 8 times of multiple-day stays in the hospital and a total of 6 months of chemo. There will only be a need for 7 days of radiation however rather than the 9 they told me last week. So this is our one bright spot. The chemo drug they administer – Doxorubicin is very aggressive. It was added to the chemo treatment for this type of cancer just last year after it showed in research studies to improve survival rates by 66%. The drug looks like Kool-Aid and it only takes ½ hour to administer in the office. However it takes hours to coordinate labs, and charts and meet with the doctors, etc… The radiation appointment takes about 1 hour since they had to get him a new CAT scan on him and they make a mold of his body in which he will lay for the treatments. His actual radiation time was only 1- 2 minutes but it takes many hours to set up for the initial procedures.

Tayyib gets sick on the way home and throws up for the next 8 hours. The doctor had given us a prescription for Zofran but I could not find any pharmacy in Stevens Point/Plover that carried this drug in an infant suspension. Only place to carry it without ordering it – Marshfield Hospital pharmacy… I wish they would have told me this before we drove home an hour.

Around 8pm Tayyib starts to hold Popsicles down and then juice and soda. He sleeps with only 2 wake ups and no other throw ups.

Sunday, August 3, 2003

Ahmet’s mom flies into Chicago, IL. She has agreed to come and take care of Tayyib during his chemotherapy since it was not recommended by the doctors to keep him in daycare when his blood counts will be fluctuating with each treatment. Ahmet's mom's airplane is grounded in Indianapolis for 6 hours waiting for storms to pass and to refuel the plane. They get to the house at 12 midnight but were suppose to get home around 7pm.

Thursday, July 31, 2003

It is Ahmet and my 5-year wedding anniversary today and we get the news that Tayyib’s cancer is Clear Cell Sarcoma of the Kidney (CCSK) and that it is at stage 3, not a stage 1. They found cancer in a localized spot on the lymph node and soft tissue by his kidney. CCSK is an unfavorable cancer that is not Wilm’s. It’s harder to get rid of it and also has a much higher rate of recurrence than other cancers of the kidney. We need to report on Monday for chemo and radiation! We are told a schedule of chemo that is aggressive.

Monday, July 28, 2003

Tayyib is released from the hospital to go home and wait for the pathology reports from the Wilm's Institute. We get to sleep in our own beds tonight. Yahoo!

Sunday, July 27, 2003

Tayyib toots and has two bowel movements so he gets to eat real food. He wants to go out of the room and play in the playroom. I know he is feeling better! Still needs morphine every 4 – 6 hours for pain but mostly at night for sleeping.

Saturday, July 26, 2003

Waiting for Tayyib to start tooting so we know that his bowels are beginning to work but nothing is happening, so we wait. His right kidney seems to be working great.

Friday, July 25, 2003

Initial test results are back, but not conclusive. They need to send the tumor samples away to the National Wilm’s Institute in order for them to identify the cell type. Findings are between a Wilm’s and a Clear Cell Sarcoma of the Kidney. They start supplementing Tayyib’s IV with fats and proteins since he can’t eat yet.

Thursday, July 24, 2003

I have my 20 week appointment with OB/GYN in Stevens Point today. I go into work for 2 hours, check on house, get bills, go to bank, while in Stevens Point and before heading back to Marshfield. My sister, Peggy and her friend, Kathy sit with Ahmet and Tayyib at the hospital just in case the test results come back while I’m gone.

Wednesday, July 23, 2003

Tayyib is still on morphine about every 4 hours for pain. He sleeps most of the day, but we see improvements every day with him wanting to be held more and wake more often also. Initial test results will be back from the pathology labs today or tomorrow.

Tuesday, July 22, 2003

Tayyib grabs me in the early AM and stands up in his PICU crib wanting to be held. Tubes are everywhere and he is weak but he manages to pull out his GI tube even with arm restraints. His face has swollen up so much from the surgery and the water retention that he looks like a little boxer with his eyes swollen shut. We are transferred to a regular room on Peds floor and out of PICU later that day. We are only in this room about 3 hours and then they transfer us to a chemo room on the Peds floor (The Cabin). Tayyib has his urine catheter taken out before bedtime, since his urine output is good.

Monday, July 21, 2003

Tayyib is taken to prep for surgery at 9:30 am. I've never been more scared in my life. He is such a small child to have such a major surgery. Ahmet and I get to stay with him while they get the room ready for the surgery. He falls asleep in Ahmet's arms so his leaving us if more of a trauma for Ahmet and I than for him, thank goodness.

Surgery starts at 10am. Some of my family from Wausau (Sherry, Jerry, Peggy, Grant) comes to sit with us during the surgery. Ahmet’s family calls from Turkey also to get updates. Surgeon comes out after 2 ½ hours and tells us it looks from the naked eye like a Wilm’s Tumor - stage I. The most favorable outcome we can hope for in this instance. My friend, Julie P, from Wausau and John J, from the University, stop by also to give comfort and see if there is anything they can do.

After surgery is done, Tayyib is placed in PACU unit for most of the afternoon and only one of us can see him at a time. He did well and only had 2 ½ hours of surgery. ½ hour of this was placing a Hickman catheter in his chest for chemo treatments and lab draws. Transferred to PICU later that day where he will remain for a few days. Ahmet and I are taking turns staying overnight in the hospital with Tayyib while the other person goes over to Ronald McDonald house and gets a good nights sleep.

Saturday and Sunday, July 19 & 20, 2003

Trying to get used to a hospital routine. (Labs every morning at 5am, temperature and blood pressure taken every four hours, etc..) We book a room at the Ronald McDonald house on Sunday since we will be in Marshfield for many more days to come as Tayyib recovers from the surgery. The staff tells us that he might have his first chemo session before we leave the hospital depending on if the pathology reports come back fast. Tayyib pulls out his IV drip again this time they agree to leave it out till Sunday night and at that time it takes 30 minutes, and three pokes to get one to stay.

Friday, July 18, 2003

CAT Scan this morning. They put him to sleep to conduct the scan. It came back in the afternoon and we were told that his surgery would be on Monday to remove tumor and left kidney. Dr, McManus, the Pediatric Oncologist at Marshfield is still suspecting Wilm’s tumor. Tayyib, being an active little boy, pulls out his IV drip this afternoon and it takes 45 minutes of holding him down to get a new one in his arm. Ahmet stays the night with him in the hospital and I go home to care for the dogs and bring back clothes for multiple days. Sherry and Jerry, my sister and brother-in-law, take our two Pomeranian dogs so we will not have to keep running back and forth from Marshfield to Plover each day. Rob and Amanda Manzke from the university, offer to watch the house and water the flowers which also will help us tremendously.

Thursday, July 17, 2003

I had a message at my office this morning to call Dr Reed’s office ASAP about getting Tayyib in for an ultrasound of abdomen at 12N today. My ultrasound of the baby is set for 11am, so this worked out ok. Ahmet came to the appointment with me and we found out that we are having another BOY! Ahmet leaves my appointment early to pick up Tayyib for daycare for the 12N ultrasound. Tayyib hated the ultrasound. He cried the entire time. We were ready for Tayyib’s 1pm appointment with Dr Reed in order to find out what was going on.

We were floored when she told us that he had a tumor of the kidney and she suspected it to be a Wilm’s tumor – in other words … cancer. She asked us if we could go over to Marshfield Clinic within the hour since she had already called over and made an appointment for Tayyib to be seen by a Pediatric Oncologist.

After much shock and tons of crying we arrived at Marshfield Clinic and they checked us into an exam room right away. We met Dr. Nickerson who was the Oncologist on call and he told us that they were going to start his first IV drip immediately and that he would need a CAT scan of his body. Also, that he would be admitted directly into the hospital in a few hours time. After much talking it was decided that they couldn't do a CAT scan until morning since we had allowed Tayyib to eat and drink after Dr Reed’s appointment.

I called Kristin V. to let dogs out at 5pm since we had been admitted into the hospital and decided that Ahmet would go home tonight and let the dogs out. While home he called his family in Turkey with the news. I start to call my family here in Wisconsin with the news also. What a sad day.

Friday, September 26, 2003 9:53 PM CDT

Back to Marshfield today for Ahmet, Grandma and Tayyib. Labs need to be drawn and if he’s in the ok range he will have another dose of Vincristine today.

Wednesday, July 16, 2003 8:56 PM CDT

Have a call from Radiologist on answering machine when I get home at 5pm from work. No message left other than just wanting to see how Tayyib is doing.

Tuesday, July 15, 2003 8:55 PM CDT

I take Tayyib to local Peds Office for breathing difficulties wondering if it is pneumonia. High fever of 103 on Monday night. She orders x-ray of chest and abdomen after physical exam. Decides it’s constipation and to do enemas and come back Thursday for follow-up appointment. Abdomen x-ray has area that she needs radiologist to read.

Tuesday, September 23, 2003 8:52 PM CDT

Tayyib finished a 3-day round of chemo on Monday, September 22, 2003. We go back on Friday the 26th to check his counts and also for a small dose of Vincristine (Day 7 - post treatment).

With the last intensive 5-day chemo treatment his blood counts started to go down at 9 days past the first dose, but hit rock bottom at 12 days past.

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