Wednesday, April 27, 2011

Counts Recovered

Easter weekend was a blast .. the kids loved all the egg hunts and once again they were spoiled by the family and our neighbors. Colin and Maddie had fun hunting for eggs left by the Easter Bunny. Quick story.....Saturday night Colin asked Daddy to put the basket of eggs on the deck so the Easter bunny could find them. Colin picked just the right spot on the deck and we "left" the eggs for the Easter Bunny....A little while later, as Colin was falling asleep, we went to retrieve the eggs....only to find 6 missing and the dog running away chopping on egg shells! Too funny! We'll post some pictures later this week.

Today Colin had a blood check and while his ANC has improved, it's improved more than the range they would like to see him in. His ANC was calculated at 3,700. The good news is that as his blood counts have recovered, he can resume his daily oral chemotherapy, starting at half the dose he was on prior to the halt in medication. The plan is to go back to clinic in two weeks for recheck. If still high, will increase dose by half until his ANC levels fall back in range between 750 and 1500.

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Wednesday, April 20, 2011

Happy Ending to a Stressful Day

We arrived at clinic today around 8:30 filled with mixed emotions. Our anxiety levels were heightened as Colin's sleeping routines changed dramatically from last Wednesday through Monday. Rather than pulling out every trick he had to avoid bedtime, he was asking to go to bed. He had also complained that his leg hurt on Monday. On one hand, we knew that steroids were a likely reason for his change in behavior but we were also very concerned based on continued low counts over the past few weeks. However, by last night, (a couple days after his last steroid dose) he was back to his normal self which gave us some relief.

Colin was a trooper as usual and went through the normal routines, including the needle sticks for his blood draw without a problem. We then quickly settled down with a movie, books and toys and waited for his blood counts to come back, praying for good results. Colin's buddy Dylan and mom were there which was a helpful distraction in easing the anxiety we felt.

Unfortunately, his ANC remained low (600) and Colin got ready for a bone marrow aspirate. By 11am, we were in the procedure room. He did very well during the procedure and he was slugging down apple juice and inhaling a banana soon after. Soon after that, he was up and back to activity table.

We were told it could take up to 24 hrs for the test results on the bone marrow although they would try to get them to us today if possible. (A big thank you to the staff as they were very supportive to us throughout the day). By 1 pm, we were home, trying to keep ourselves busy.

At a little past 4, we got the call. The lab tests were in and everything looks good. No relapse. No leukemia. We both cried some happy tears, had a family hug, and breathed a sigh of relief. Although we are still unsure what is causing Colin's counts to remain low, it appears to be something viral. So, back next week for a recheck. We will continue to withhold his home chemo until his ANC counts come back up to a minimum of 750.

Minutes after the news we packed in the van and made our way to the toy store where the kids were able to pick out a few toys. Colin was very happy as he's been asking to go to a store for a while now however we tend to avoid them when counts are low. But, this was something to celebrate! The evening ended with a home cooked meal from Auntie, Uncle Joe and Frankie along with Easter egg coloring.

Thank you for all the support, love and prayers over the past couple of weeks. Please keep them coming in hopes for higher counts next week. It's just about 10:30 so we're going to call it a day, a happy ending!

Love to all,
Mike & Heather

Thursday, April 14, 2011

Highs & Lows

In many ways, the visit to clinic yesterday was a strong reminder to us of the reality and of the many highs and lows we have experienced as a family since Colin's diagnosis. Today we are experiencing one of those low moments.

Colin was scheduled for his quarterly lumbar puncture and chemo infusion. These visits are typically stressful, but this one was even more so as we anxiously awaited the status of Colin's ANC counts. As his ANC count has been low for the past couple of weeks we were hopeful his counts had rebounded and he could resume standard daily treatment.

Colin did very well getting ready for clinic. Upon arrival, he was accessed pretty quickly, blood was drawn, he began receiving his IV chemo and the numbing cream was placed on his back. All without skipping a beat or any fuss. We began playing in the infusion room while the numbing cream had a chance to kick in. Then, two Doctors came to our station and closed the curtain. We looked at each other with a blank stare and got an instant pit in our stomach as this was very unusual.

The Doctor explained that Colin's ANC count (600) remains below the threshold (750) necessary to safely administer his daily chemo dose at home. They explained that we should continue to hold the chemo and come back next week for a recheck on his counts. If his counts remain low, based on his treatment protocol, they will then perform a bone marrow aspirate to test his marrow and rule out any indication of a relapse. So, we wait until next week and pray that Colin's counts have improved enough to cancel the need to perform this test.

However, as a positive sign, they do not think there is an issue as all else looks good, and Colin's count will rebound in time. For example, they indicated that the daily chemo (6MP) is known to cause a low ANC as some children metabolize this drug much differently than others. Colin's daily dose was recently increased and it may be too strong. The Doctor requested an extra blood sample to test how Colin metabolizes 6MP. Or, it could simply be that his body needs a break and needs a little more time to rebound. So we wait until next week...

Colin did receive the lumbar puncture and IV infusion and did very well. After he had recuperated we played at the activity table. As we looked around we noticed many new faces and we witnessed a pretty young girl preparing for a trip to Boston which we can only assume is for a transplant. This was another reminder about the cancer world and how precious health really is.

Luckily, our visit did end on a good note, we were able to take part in a family photo shoot sponsored by Flashes of Hope, a fantastic organization of professional photographers that donate their time to capture lasting memories for families to treasure.

This will be a long week so please bare with us and our emotions. Thank you for all the voicemails, text messages, emails and facebook posts. It's days like this that we pull our energy from each and every one of you. Thanks for all your love and support.

Friday, April 8, 2011

Rebounding, No Chemo, Golf Tournament

Last week Colin had a CBC and the results indicated his ANC is rebounding (700) however it must be 750 for him to start his oral chemotherapy again. The Doctor's assured us this is normal and will happen from time to time when Colin is or was fighting off a virus. He's scheduled for a spinal tap next week and will receive chemo through the spin and IV. We also hope his counts are high enough to start his normal chemo schedule at home. Spinal tap days are always very emotional for us so please send some extra love our way next week. We had a great weekend with two date nights and enjoyed the nice weather! ~~~~~~~~~~~~~~~ A Golf Tournament to benefit Colin will be held next month. Date: May 14 Time: 8:30 shot gun start, 18 holes Place: Portland West Golf Course, Portland, CT Price: $95 per golfer or lunch only $20 Spots are limited so please message us if interested for more info. ~~~~~~~~~~~~~~~ Have a great week!

Sunday, April 3, 2011

Follow our Journey by E-mail

We've added email notification to our blog. If you would like to receive notifications when we post updates please submit your email address in the 'follow our journey by e-mail' field below Colin's picture. Have a great week and pray with us for count rebounds!