Wednesday, December 30, 2009

4th Week Postponed ... Sigh of Relief

Once again, we arrived at clinic hoping Colin would be able to begin his next round of treatment. Once again, his ANC was not high enough. He was at 286 and needs to be at least 750. As he has now gone this long with low counts, he had a bone marrow aspiration. The nurse practitioner who performed the procedure was fantastic. Given the holiday season, results from the tests may haven taken up to 24 hrs to prepare. However, she walked the test down to lab and called us later in the day with the results. The results did not indicate any presence of leukemia cells. Needless to say, we had a huge sigh of relief.

Colin has also been on a 3 day per week cycle of an antibiotic to prevent a type of pneumonia since his diagnosis. However, the antibiotic is known to cause marrow suppression (resulting in low ANC) in some. We will take him off this antibiotic and start a new type in hope that this may help his counts. SO....Back to the regularly scheduled program next week ... treatment on Thursday as long as Colin's counts have rebounded. Let's all pray for a good week and a happy healthy new year!

Monday, December 28, 2009

Merry Christmas!

We started the holiday weekend off by celebrating Christmas Eve with our siblings. We shared our lobster eve tradition by cooking 7 lobsters and steak for all. Colin and Maddie were in aww with all the festivities around the lobsters. Great company and laughs .. just what the Dr ordered for Mike and I :)

That evening Daddy read Colin 'the night before Christmas' while Santa and his helpers worked all night on the big pile of gifts under the tree.

Christmas morning Colin walked into the living room with this frightful look on his face because he thought Santa was still here. It wasn't until Daddy told him Santa had gone home to the North Pole when he began to enjoy himself.

Let's open presents Daddy!

Merry Christmas Daddy!

Hugs for Mommy!
After a morning visit from Gigi, Papa and Uncle Jack Colin and Maddie took an early nap so we could continue the celebration at Aunt Liesl's house later Christmas afternoon...

More stories with Grandpa!

More presents ...

Off to Gigi and Papa's on Saturday for the Greening celebration!

One more snuggle Nanny, one more story Nanny!

Merry Christmas from our family to yours!

Thursday, December 24, 2009

Third Week Postponed

Our normal Thursday routine started a day earlier this week due to Christmas. When Gigi arrived, Colin knew it was treatment day and got into serious mode. Once again he told the nurse what arm he wanted her to draw the blood from and the order of the vital signs. Because his counts weren't ready last week they had us wait for the results. It seemed like the never ending morning as we waited .. clinic was very busy because of the holiday so it took nearly two and a half hours to get the results. Again, Colin's counts were not high enough for treatment. While his hemoglobin count has increased his ANC level is extremely low (170). The ANC level must be at 750 for him to proceed with treatment. Colin's favorite new Dr (Dr. Joe) reassured us that this happens from time to time and he is not too concerned. He also stressed how Colin should not be in public places or around anyone who is sick because his immune system is very low. Should Colin's counts continue to be low next week he will have a bone marrow aspirate to to test the marrow. However, the Dr's and Nurse's are confident that the results will be negative for cancer cells but is required under protocol. A benefit of this test is that it may stimulate his marrow to boost production of blood cells and give us peace of mind that he remains in remission.

Despite a very long wait for the blood count results, we managed to keep Colin entertained with books and more books. He also enjoyed playing Santa while handing out gifts and cards (compliments of Aunt Ginny) to all his Doctor and Nurse friends.

Mike and I have taken this news pretty hard since we had convinced ourselves he was ready this week but today is a new day and while we have this on our minds we have decided we need to put it aside and make this a truly special and Merry Christmas holiday for our family.

Sunday, December 20, 2009

Comment Section

Hello Followers! Thank you all for giving our family the strength, love and support over these past couple of months. We appreciate all the thoughts and prayers you have sent our way. We'd like to start capturing them through the comment section of each posting. The comment link can be found at the bottom of each posting. We believe you need to be signed into blogger to submitted a comment. All comments are sent to us to read before they go live on the site, so should you have a comment/thought/prayer that you do not want us to post on the Colin's website just say the word and we'll keep it archived for our eyes only! We look forward to reading each and every comment our followers post and thank you all again for being there for us.

This week we pray Colin's counts have rebounded enough to begin his next phase of treatment scheduled for Wednesday.

Thursday, December 17, 2009

Postponed Again

While Colin's counts continue to rise they didn't rise enough over the past week for treatment so he did not receive his treatment today. The nurse's and doctor's have reassured us that this is nothing to be alarmed over and it will happen periodically throughout this phase. His body is still recovering from the first phase and they are pretty confident he will be ready to begin this new phase next week. Since it's his white blood cells that need to rise a little more there isn't much we can do other than let time pass while his body produces more cells. So, we have another week off and look forward to identifying the difference between a two year old without chemo verse a two year old with chemo.

Next treatment is scheduled for Wednesday.

Sunday, December 13, 2009


On Thursday, Colin was to begin interim maintenance. This phase lasts for eight weeks and includes multiple chemo drugs given through IV. This phase is also count dependent which means if Colin's blood counts come back low, treatment is postponed until his blood counts recover. Unfortunately his ANC count nosedived and start of treatment was postponed until after his blood counts are checked again next week. We've been assured that this is not unusual and something not to be alarmed about. ANC refers to the number of infection fighting cells. The lower the number, the more prone he is for infection. He must have an ANC count of at least 750 for treatment . He was at 200 on Thursday.

Friday night Daddy and Grandpa held down the fort while Mommy and Grandma went to the third annual Greening Girl's cookie swap. The attendance grows each year as does the variety of cookies we all get to take home!

Saturday Colin spent the day with his Aunt Liesl and cousin Frankie while mommy and daddy started and almost completed their Christmas shopping! He had lots of fun! He also worked up an appetite and had a full bowl of Mac N Cheese for dinner (this appears to be his new favorite food..Kraft only though!)

Today was the holiday party in West Haven sponsored by the Tommy Fund and the Yale Children's Oncology Group. It was a fun day and included a visit from Santa! Colin wanted no part of Santa, but Maddie loved him, even tugging on his beard and giggling. Colin flirted with his new friend Hannah while Mommy and Daddy exchanged stories with her parents. It was also comforting to be surrounded by others and seeing family's at various stages in recovery. While we've been in touch with other family's who have previously been through this journey it's important for us to have a support system of family's currently going through this process as well.

Monday, December 7, 2009

Lots of Firsts

This past weekend Maddie had cereal for the first time! She enjoyed it more than we thought....she's like a little bird and opens her mouth wide each time the spoon comes near. If you're not careful she'll grab the spoon out of your hand and try and feed herself. It's pretty funny to watch because she hasn't mastered the whole hand eye coordination yet. You never know where the spoon is going to end up .. anywhere but her mouth!

We also got our first snow storm this weekend, well if you call it that... a dusting. Daddy and Colin were so excited they had to get all bundled up and head out to see the snow. He even had to bring a little snowball inside as a present for mommy. Nice!

Mommy also started back to work last week, working two and a half days. Although it was hard to go, Colin was very excited to see Gigi and Papa for the first day and Grandpa and Grandma for day two.

We've made our first ALL friend, Hannah, who is 18 months old and has the same diagnosis as Colin. She is four weeks behind Colin and hopes to come home from the hospital tomorrow. Hopefully Colin will get a chance to meet her soon but in the mean time Mommy and Daddy look forward to sharing stories as we progress through this journey.
Finally, Colin also had steak for the first time! He loved it.

Saturday, December 5, 2009

Blood Count Education

Thank you everyone who called showing your concern about our last post. We thought we'd send a quick post to educate everyone on decreasing blood counts. While we don't want to see Colin's counts decrease, this is a normal process. During his next phase of treatment, which starts next Thursday, Colin's blood counts will have to be at a certain level to receive his chemo treatment. We've also been informed that during this phase he may need some transfusions which is also normal. Once again we thank everyone for showing their concern and we will keep everyone posted. So far so good this weekend besides the normal side effects.

Thursday, December 3, 2009

Dr. Day

Today both Colin and Maddie had Dr. visits...

Colin had his last treatment of this phase today. His treatment consisted of two injections. Once again he did great and Colin and Daddy went to visit the owls we spotted outside the ER. Now it has become part of the hospital routine. Colin's counts have decreased so we'll be watching him closely. Next treatment is next Thursday.

Maddie had her four month check up today and the results are in:
Height - 25" (75%)
Weight - 16lbs 2.5 oz (95%)
Head Circumference - 43cm (50%)
She received two vaccines today so Colin will be able to take her band-aids off tonight.

After both Dr. visits we made a quick visit at Brenda's house so Colin could play with the kids since it was 65 out today. It was great to see him doing laps around the house with Ryan, Jess and Liam. We also covered Brenda's driveway with chalk drawings during our visit.

Wednesday, December 2, 2009

Holiday Weekend

It's been a while since we wrote so we'll try and catch you all up!

We had a great holiday weekend starting on Wednesday evening with a Xeller/Greening family reunion. The reunion was at Gigi and Papa's house where 6 out of 7 Xeller kids and their families took over the house. This was the first time Gigi and Papa had 10 young kids running around the house and we should have planned this event much sooner because we finally broke the bird clock (lol). Gigi pulled off a fabulous sit down dinner for 28 adults and children and it was a good time by all. Hopefully this will turn into an annual event.

Turkey Day was again at Gigi and Papa's house where we had another great dinner which consisted of Turkey, sweet potato casserole, green bean casserole, bread dressing, turkey potatoes and a ton of deserts. We were able to spend quality time with Gigi, Papa, Auntie Courtney, Uncle Mike, Uncle Jack, Uncle Ron, Aunt Kerrie, Cousin Morgan, Cousin Rachel, Grandma, Grandpa, Aunt Liesl, Uncle Joe and Cousin Frankie. At dinner this year, Gigi had everyone at the table pick someones name and we had to tell them why we were thankful to have them in our life. After dinner we chose our secret santa names in record time since no one picked themselves the second go around. As a group we decided to change things up this year and we incorporated a theme.... green. We can use our own definition of green so please post ideas for us!

On Saturday we helped Aunt Liesl, Uncle Joe and Cousin Frankie make a dent in their left overs. Grandma and Grandpa came for dinner too and worked up an appetite keeping up with Colin. Cousin Frankie taught Colin some songs on the piano and read lots of books! Colin's dinner was the filling from an apple pie ... he was up very late that night!