Sabbath, January 21, 2012

On Monday when we went to the clinic, Derek’s ANC had risen to 600.  That is still low, but it was high enough that I was quite sure that by the end of the week he would begin phase 3 called Interim Maintenance.  They wanted to admit him Wednesday evening so they could hydrate him and give him a bone marrow and spinal chemo Thursday morning before giving him the high-dose methotrexate.  The high-dose methotrexate is part of the experimental drug protocol he is on as part of the study.  It is the second “big gun” that is pointed at him.

Wednesday when we went to the clinic to check his ANC, we were fully prepared to head to the hospital following the clinic visit.  It felt very strange planning a hospital stay, knowing it was going to happen.  The house was even clean and the laundry done. I was ready.

Back before Christmas when we were in the hospital, Derek and Vince were in the playroom when a generous donor who calls himself the “Toy Fairy” called to ask if there was anything in particular he could get for the cancer unit playroom.  The girl in charge of the playroom turned to Derek and asked if there was any toy he particularly wanted.  We avoid the video games and television that entertain so many kids, and Derek had about played himself out with most of the other toys, so it was really nice of them to ask Derek for his advice.  Vince and Derek suggested getting some Snap Circuits. We have a set at home that my family gave him a couple years ago, and he loves following the directions to make something electronic or designing something of his own. It allows for a lot of creativity while learning about electrical circuits, electronic parts, and what they do.  Just after Christmas, we heard at the clinic that they had received three sets from the “Toy Fairy” and that everyone at the hospital playroom was really enjoying them.  They thanked Derek for suggesting a great toy.  Now Derek was excited to see what they got and filled with anticipation of something new and interesting to play with at the hospital.  He was ready to go.

Derek’s ANC was 1600, well over the 750 required to start the next chemo round.  But there was one hitch: there were no beds available on the unit.  They sent us home.  It was almost a let-down. I could hear disappointment in Derek’s voice. It was almost as if we were expecting a baby on a particular day, and it didn’t arrive. (That is another story from when Derek was born.) Both kids were a bit fussy that evening. I could understand, because even I felt a little letdown.  Even though I have reservations about the next phase, I know it has to happen, and I guess I was ready to get it over with.  They said that after rounds Thursday afternoon, they would know whether there would be a bed on Thursday. 

All day Thursday we waited for the phone call.  Finally at 3:30, I called them.  Yes there would be a room, but the child had to be discharged (which is a lengthy process,) and the room needed to be cleaned.  They would call when they had a time it would be available.  At 6 p.m. I still hadn’t heard from them and called again. The unit secretary said they were cleaning it right then and told me to come.   I fed the kids a quick supper and got in the car.  When we arrived at the hospital, the room was still not ready. We waited.  Finally at 7:30 we were able to settle into his room.

Friday morning, Derek was sedated for a bone marrow sample and a spinal with intrathecal chemo.  Then a few hours later they gave him the VinCRIstine and started the high-dose methotrexate.  They hung a large bag of the chemo that will drip into his veins over the next 24 hours.  Because the medication is sensitive to light and will take so long to administer, it is covered with a brown plastic bag, and the nurse covered the IV lines with tape.

Derek was very active and energetic yesterday afternoon. He did not want to settle down and sit anywhere, especially in his bed. We got one of the Snap Circuit sets from the playroom. Derek was very happy to find it is a much bigger set than the one we have. He happily made a siren using instructions and then designed a fan on his own using a meter to compare one battery pack to two.  He also made a music player that played “Happy Birthday.” 

So far, he has had few side effects that we can tell.  His appetite has dropped and he feels some nausea, but that is all so far.  Once the medication is in his system, they will have to use another medication called leucovorin to rescue the healthy cells. This medication has to be administered at precise times following the chemo.  We will be able to leave the hospital when blood and urine samples show the methotrexate is out of his system.  Possible side effects besides nausea include mouth sores, vomiting, and diarrhea. He will repeat this cycle approximately every two weeks for a total of four treatments.

Thank you for your prayers on Derek’s behalf as he begins this next two-month phase of treatment.

Monday, January 16, 2012

Wednesday, January 11, Derek had his last chemo treatment of Phase 2 (Consolidation.) Now we have to wait until his blood counts come back up before we start Phase 3 (Interim Maintenance = IM.)  Wednesday, his blood tests showed he is extremely low with an ANC of only 100.  They cannot give him neupogen this time because his counts need to come up on their own before beginning IM.  So we will have to be extremely careful that he does not get sick. 

As a precaution, the doctor prescribed azithromycin to help prevent any bacterial infections.  When I picked up the medication, I was dismayed to find I had to give him two very large tablets once a day. Derek can swallow small pills pretty well, but he had never swallowed anything this large.  When I gave the tablets to him, I had to cut them in half, but still he had a very hard time swallowing them.  Because they were cut, they tasted horrible.  Even with applesauce and yogurt they did not go down, and when he took a drink, half a tablet fell into his water bottle and quickly disintegrated. I was frustrated.  I didn’t want to give him two cups of water at bedtime.  I decided to try again the next day. 

Thursday, I cut the tablets and put them in a tiny bit of water to disintegrate. We have heard that chocolate can sometimes mask medicinal flavors, so I added some chocolate syrup and drew it up into a syringe. Apparently, the taste of azithromycin is not masked well even by chocolate. When I shot it into his mouth, he sputtered and gagged. One mouthful ended up on the floor. Now I was really frustrated.  I could not get this medicine down him. Surely there must be an oral suspension they could give him instead. I called the pharmacy to ask them what I could do.  They said they could exchange it for a flavored liquid.  Since I was going to Loma Linda anyway for a Bible study/prayer group that evening, I could stop by to pick it up afterwards.  While I was in the study, Vince called me to say the doctor had called him to tell us that Derek had mistakenly been given 10 times the dose of azithromycin he was supposed to get.  Instead of 100 mg, he was getting 1000 mg from those two tablets. WHAT????!!!! How could that happen?? They only caught the error because I called them about changing it to a liquid.  All of a sudden, I was glad he had spit half a tablet into his water bottle and the mouthful on the floor. At least that reduced the overdose a little bit. And it had been the motivation for me to call.

But what would be the side effects of that large a dose in such a little body? The pharmacy apologized profusely and told me that stomach pain (which he was already having) and diarrhea were likely the worst side effects. I was relieved because I know some antibiotics can cause hearing loss.  Fortunately this is not one of them. Other than the stomach ache Thursday night, he has had no other adverse side effects. He did not even have diarrhea.  Thank you, Jesus!

This week, Derek will have a bone marrow test to check for any residual cancerous blast cells.  If his counts rise enough, we may start the next phase later this week.  Interim Maintenance will consist of four in-patient treatments spread about two weeks apart.  He will likely be in the hospital three to four days each time. His protocol will include high-dose Methotrexate with Leucovorin rescue, VinCRIStine, and intrathecal Methotrexate. He will also get Mercaptopurine for 56 days in a row. Phase 3 here we come.

I Am a Cancer Mom

I am not a soccer mom or a hockey mom, though I dare say I am as tough as any of them, maybe even tougher.  But I am not bragging.  Although I spend hours on the road transporting my children to events, I do not take them to practice or games. The events my children participate in are more of the life-or-death nature. The competition is fierce. There is no practice for the contest we are involved in.  We have been thrust into the fight without practice and without warning, and even without our permission.  We meet with our team and coaches on a regular basis, sometimes as much as five days a week and for hours at a time, sometimes all day. Sometimes we must live at the facility where we have around-the-clock assistance from our team and access to specialized competition methods.  I cheer them on, but not from the sidelines. I get right in there and fight, too. Sometimes I have to wield the instruments of conquest.  It is all blood, sweat, and tears; my child’s blood, my sweat, and all of our tears. So far, we are winning, but the fight is far from over, and the tide could turn at any time.  Vigilance is vital.  To let up, even for a day, could be the difference between victory and defeat.  We are in hand-to-hand combat, so to speak; my hand tightly holding those of my children and husband, and I’m not letting go. I am a cancer mom.

© Heather Page 2012

January 9, 2012

Christmas Eve Sabbath, Derek’s blood counts were quite good and we decided to go to church. It was the first time since September 3 that we have gone as a family of four. Derek was armed with a mask and I had bottles of hand sanitizer in my purse. It felt so wonderful to celebrate the special Sabbath with our church family who has done so much to support us on this journey.

Christmas day was relatively quiet spent with a few friends and family. The weather was unseasonably warm, and the kids played outside much of the afternoon. The next week was spent at the clinic as Derek had chemo each day. Derek’s counts were dropping and he required blood and platelet transfusions on Tuesday. Wednesday he had spinal chemo for which he was sedated. New Year’s weekend was very quiet as we sequestered ourselves away to avoid getting any bugs. Last week we again went to the clinic two days, one for chemo and the next for another blood and platelet transfusion. Thursday we went to the hospital for sedation and spinal chemo.

Other than falling blood counts, Derek has taken it all quite well. His appetite has been pretty good, and he has been able to go outside to enjoy the warm weather. We have taken several short walks, and his energy is coming back. His resilience amazes me. This Wednesday, he has the last chemo for phase two (Consolidation) of his treatment. Then we will have about two weeks off for his blood counts to come back up before starting phase three (Interim Maintenance.)  We are now half way through the most intense treatment.

New Year

What will you do that is new in this New Year? This was the question posted by a friend on Facebook. It is a good question. It implies activity and purpose rather than just hoping things will happen or change. Sometimes lasting newness doesn’t just happen. It is planned for carefully and worked toward diligently.

There are some things I hope for this New Year, things I intend to work toward with purpose, activity and choice. I hope:

• That I will figure out how to fit in house cleaning, cooking, laundry, and home schooling with all the hospital stays and clinic visits.
• That I will take advantage of each day granted me to laugh, play, and read with my children.
• That I will be a reflection of Jesus to those around me, lightening loads, bringing peace, hope, and smiles.
• That I will have peace, hope, and smiles.

Unfortunately, some newness does just happen, unexpectedly, without warning. I probably don’t really want to know all the new things I will do this coming year that I will have no control over; things I do not wish for or plan for, but are developing a new me, nonetheless. Here are a few new things I will do, though I don’t want to. I will watch my son finally lose all his hair. I will watch him go through new chemotherapy treatments and cranial radiation. I will learn the side effects of those treatments by watching Derek experience them. I will watch and listen to my daughter learn more about Leukemia than I knew even five months ago. I think in this aspect, I will need to take it a day at a time instead of thinking of the whole year ahead.

I have a few things I hope for this year, but for which I have little control over. I hope:

• That Derek’s leukemia will stay in remission.
• That Kristen’s rheumatoid arthritis will enter remission.
• That by the end of the year, I will have seen once again that God is always faithful.

Fortunately, the latter I am assured of because God has that as His plan for this year as well, something He will work toward diligently with activity and purpose. His goal is a new me. What will He do that is new this New Year?