Thursday, July 30, 2009
Justin is my 10 year old nephew from New Jersey. He was born premature, has ADHA, and yesterday was diagnosed with Type I Juvenile Diabetes. He is still in the hospital learning the ropes of his "new normal." He is doing well but is also having a tough time understanding that he can not just eat whatever or whenever he wants without checking his counts and giving himself shots. I did some research on the Internet about Diabetes and found out that type 1 diabetes occurs when the body's immune system attacks and destroys certain cells in the pancreas, an organ about the size of a hand that is located behind the lower part of the stomach. These cells -- called beta cells -- are contained, along with other types of cells, within small islands of endocrine cells called the pancreatic islets. Beta cells normally produce insulin, a hormone that helps the body move the glucose contained in food into cells throughout the body, which use it for energy. But when the beta cells are destroyed, no insulin can be produced, and the glucose stays in the blood instead, where it can cause serious damage to all the organ systems of the body. For this reason, people with type 1 diabetes must take insulin in order to stay alive. Justin will be seeing an Oncology Doctor, cancer doctor, just like Liz. Please keep Justin and his family in your prayers so that Justin will have and lead a healthy and successful lifestyle for the rest of his life.
Liz is finally done with the dreaded Delay Intensification I phase. Last Tuesday she took her last chemo of this phase and now we are in the count recovery phase. We had her blood drawn this morning at Liberty and her counts are back. ANC (immune system) 220. She is going up, last week she was at 140. What this means is she is neutropenic, absolutely NO immune system. WBC (white blood cell) 0.9, Hemoglobin ( blood in the oxygen) 10.8, and Platelets 75k. Liz received two units of platelets last week. The fist unit was from a single donor. The second unit was from six different people because they are short on platelet donors. If you have an hour to give and would like to help out with the shortage, call Hoxsworth Blood Center in Mason at (513) 451-0910 to set up your appointment. To give blood you do not need an appointment and it only takes about 25 min. from the whole sign in to donating your blood. We are looking for her ANC to be 750 and her platelets to be 75k to move on to the Interim Phase II on Tuesday Aug. 4.
Here is the 411 on Lizzy's next phase. There is NO day 29! This means that she will forge through this phase no matter what her counts are. Interim II will last 57 days from the start date.
Day 1 Liz will receive Vincristine, IV Methotrexate, and IT Methotrexate. IV is intravenous and IT is Intrathecal,
through her spine.
Day 3,4,or 5 she will receive the Peg Asparaginase shots.
Day 11, 21, 31, and 41 she will receive Vincristine and IV Methotrexate
Day 31 she will receive the peg Asparaginase shot and IT Methotrexate
All of these are chemos but should not effect her counts too bad and she will be able to start school! She is very excited about that and I am thrilled that she will feel "normal" for a little while. If Liz starts on time, Aug. 4, she will end the phase September 29th, go into Delayed Intensification II on Oct. 6, with it ending sometime around Dec. 15th and WE WILL BE IN MAINTENANCE! Light at the end of the tunnel.
The Brown's and the Lothrop's will be manning a booth at the Mason Heritage Festival Aug. 22, from 10 a.m. to 8 p.m We are looking for friends of Joel and Lizzy's to help hold down the booth for an hour or two hour increments starting at noon and going through 6:00 p.m. If you or your child is interested in helping out to raise awarness for The Leukemia/Lymphma Society and also help in raising money for Light the Night walk for Team Blazin with <3 please give me a call at 513-349-5966, email me at email@example.com, or reply on the blog with the time you can do. Thanks in advance for your help.
Please pray for the follow:
My nephew Justin and his diagnoses
Bobby and Leah, Lizzy's friends on A5 South. Their health continues to get better
Minimal side effects for Liz. She has had a few bad days in here
Continuing to pray for all of you and ask for God's blessings upon you.
Thursday, July 23, 2009
I have not done this in awhile and I know that some of you do like to know more of the medical side so here goes. You may remember hearing of these two chemo's before ..... they are back. They never go away for too long. They seem to be brutal on her body but they are a necessary evil. Liz takes several medications a day that are pretty much a staple in her treatment plan, the chemo's come and go and come and go. It seems to me that the ones that always come back are the ones that are the worst.
PEG-asparaginase, pronounced: as- Pa-ruh-jih-NAYZ. The drug is given by injection into a large muscle or vein.
This medication is used to treat: acute lymphocytic leukemia.
Pegaspargase is in a class of drugs known as enzymes; it slows or stops the growth of cancer cells in your body. The length of treatment depends on the types of drugs you are taking, how well your body responds to them, and the type of cancer you have. It is a form of the drug asparaginase that is linked to a substance called PEG, which makes the drug stay in the body longer. I hate this chemo because it takes three nurses to give it to her. They stand over her thigh and count to three and at the same time they all stab her thigh muscle. It just seems so barbaric to me but I know it is a necessary evil.
Side effects from pegaspargase are common and include:
nausea and vomiting, loss of appetite, diarrhea, abdominal pain, headache, numbness or tingling in the fingertips, fatigue, dizziness, lightheadedness, feeling of faintness, night sweats, fever, muscle pain, stiffness in your joints, yellowing of the skin or eyes, seizures.
Unfortunately Liz is experiencing some vomiting, headache, fatigue, night sweats, and abdominal pain from this chemo.
Vincristine, another chemo, is given through a vein by intravenous injection (IV push) or infusion (IV). There is no pill form.
Vincristine is a vesicant. A vesicant is a chemical that causes extensive tissue damage and blistering if it escapes from the vein. The nurse or doctor who gives Vincristine must be carefully trained.
Side effects of Vincristine:
an allergic reaction (including difficulty breathing; closing of the throat; swelling of the lips, tongue, or face; or hives);
nerve problems (such as burning, pricking, or tingling; loss of reflexes, or difficulty walking);
little or no urine production, painful or difficult urination, or excessive urination;
constipation or abdominal cramps;
nausea, vomiting, or loss of appetite;
weight and muscle loss or wasting;
inflammation and sores on the lips or inside the mouth;
jaw, throat, bone, back, or limb pain;
temporary hair loss; or
redness, burning, or irritation at the injection site
As you can read, some of the side effects overlap from the asparaganise but she also is having limb pain, hair loss, sores inside the mouth, muscle loss, vomiting, nausea, and loss of appetite. These symptoms usually last about three or four days, just long enough for her to go back in and repeat the process for the next week. We do have the side effects pretty well controlled on pain meds and anti-nausea medication. Liz did have a break through today and we had to give her a a different anti-nausea medication but it worked. She has been in bed sleeping all day and probably will be tomorrow too.
This Tuesday will be her last dose of chemo for this phase. We are hoping that by Aug. 4, she will start Intrim Phase II. We also meet with Dr. Brenneman, who will be doing her radiation, Thur. Aug. 6, at 8:00 a.m. Hopefully he can put our minds at ease a little and give us a roadmap to follow and what to expect when we get to that phase.
Please continue to pray for:
the families and children on A5 South
for Liz's doctors, nurses, and any one that comes in contact with Liz
for Leah, that her ANC comes in so she can be done with her treatment
for Alex and his family that they may find closure
and for Lizzy side effects to be minimal
Blessing to all of you,
Wednesday, July 22, 2009
Sunday, July 19, 2009
So far ... So good! We finally were able to go past day 29 on July 8th and it felt wonderful. Once in the second half of the phase the first obstacle she faced was the dreaded Ara-stikin-C chemo which this time around we can proudly take out the stinkin in AraC. She has done exceptionally well on this drug this time. If I understood the docs correctly, Liz was the first patient to go to camp while on AraC. Camp, that would be the next obstacle which she hurdled with ease.
Every year Children's hosts a Hematology/Oncology Camp out at Camp Joy for one week. The teens on the floor were pretty excited about going out there and just being together. Liz was the only one in question at the time and it looked pretty unlikely that she would be able to go. However, as it turned out Liz did get to go. We took her out on Sun., picked her up on Tues., for her lumbar puncture with IT Methotrexate (chemo in the spine) and her second round of AraC. We were going to take her back to camp if she felt good but needless to say she was down for the count and finally got out of bed around 7 pm. Liz did go back to camp Wed. morning and finished out the week when we then picked her up at 10:00 am Friday. It was fun for her and Joel to get away and feel (in her words) normal. She was sad that Leah, Alex, Critter, and Bobby were not able to make it to the camp because they were too sick and/or in the hospital. Next year will be a fun year at camp and she can not wait to share it with all her friends.
Next obstacle was the kick-off for Light the Night that evening, July 17. Your prayers are amazing because she beat this one too. Actually we took advantage of the fact her counts were still so high and went straight down to the Zoo, ran to Melissa G's house to freshen up before going to Willie's on the river for the start of the kick-off. Liz and Joel both spoke as the Honored Hero's of Mason for Light the Night, September 17 at 7:00 p.m. If you would like to donate in honor of these two to the Leukemia/Lymphoma Society, go to my website at http://pages.lightthenight.org/soh/ButlerCo09/clothrop look for their faces to be on a billboard on 71/75. There will be a little girl named Rachel in the photo too, she is the hero for Sawyer Point. The night ended with a victory and Friday night fireworks at the Red's game. It was so much fun for all the volunteers of the LLS and for the Brown's and Lothrop family.
The third obstacle remains to be be seen, we will find out after her blood draw on Monday. There is a fundraiser at Shooters in Loveland for Liz and Leah. We know that Leah will not be able to attend but are praying Lizzy's counts are good and she will be able to come. If you need a flyer, it is in a post about three back. Print if off and come out to eat and have a good time. Hope to see you there.
On to the rest of this phase. We are down to two more weeks of chemo and one week of recovery time ....hahaha ...... last recovery time was a month delay. Her platelets started dropping at the end of camp so I am pretty sure she will be needing platelets next week at some point. If all goes as planned she will go into Interim Maintenance #2 Aug. 4th. I am getting a little emotional typing this. I am beginning to see the home stretch. Liz has "fought the good fight" and we are seeing the end of the year and the end of this toughest part of the treatment coming to an end. Don't get me wrong, we still have a good five months of ups and downs but we are seeing the end of the toughest part. 8.5 months ago we could not see past the next five minutes and now we are looking into a bright and wonderful future. I will stop now before I ramble on even more. But I really can not even begin to put into words the love and support we have received for all of you. The only way to know what we are feeling is to experience it and as awful as it has been, we have been blessed a hundred times more.
Thank you and we love and feel blessed for each and everyone of you.
Monday, July 13, 2009
This is a video put together by the LLS for a fundraiser last week. This cancer hits all, young and old. Liz is in it as well as Joel. Critter, Bobby, and Leah are in the video at some point too however, I doubt you will recognize them.
Cut and past the link below.
Enjoy ~ Christine
Cut and past the link below.
Enjoy ~ Christine
Wednesday, July 8, 2009
Here we sit with her wonderful team of doctors, Dr. Jen, Dr. Absalon, Mary Snow, our Nurse Coordinator, and Angela, our Clinic Nurse Practisioner, all dresses up with her port now accessed. All of Lizzy's medical team has been in to see her and ask her all the pertinent questions that she just loves to answer. I swear if you heard her answer these questions you would think she is not a well educated child, it is so embarrassing. I told her I am going to secretly tape her so she can hear what she sounds like .... UGH!
We are now waiting to go over to the main OR on floor 3 in the B building. Her procedure, LP with chemo, is at 11:00 am. Her tummy sounded really nice to Dr. Absalon through his stethoscope. On OR days they love to hear the tummy grumble, it means their stomach is empty the way it should be.
We are so excited to be here and start on finishing out this phase; even though it is going to knock her for a loop. Her counts will be down most of the time and she will be very susceptible to any illness that is out side of our little world on Windy Hollow Way. It will be very important for you to call first before coming to visit. Please call ME, not Elizabeth for verification to visits. She will tell you yes because she wants to see you even if she knows it is not in her best interest. However, along with low counts she will be outwardly pretty sick. The first half of this phase is harder on the internal organs but the second half is more visible to the outsider and physically makes her sick with flu like symptoms. These are the drugs that landed her unexpectedly in the hospital at Christmas 2008.
Thank you for your continued prayers during this delay and over the past eight and half months.
Sunday, July 5, 2009
Wednesday, July 1, 2009
Dr. Jen, called and gave me the wonderful conclusive news that her bone marrow is just worn out. It is mad, tired, and wants to be left alone. I have news for that marrow, it is going to be hit very hard again before we hit maintenance. Dr. Jen said it looks beautiful, no leukemic cells or bacteria in her marrow. There are just a few good cells that are developed and developing and it just will take a bit for the cells to fully regenerate. I will take that!
The new game plan is: blood work at Liberty on Tuesday morning, with an admit on Wednesday to continue this DI1 phase out. I swear it has been day 29 for four weeks now. I feel like it is Ground Hogs Day over and over and over again and I am ready to break that cycle. Keep praying and God will answer. In order for her to have the admit her ANC needs to be 750 and her platelets 75K. Her platelets have been fine for this entire delay, they have been waiting for the ANC's to come to the party.
Elizabeth told me that her heart was lighter and I must admit mine is too. After Jen called I fell asleep for at least two hours. I guess I was pretty relieved and the exhaustion hit hard. All the mental worry and stress is behind us and we will move forward from this on our way to maintenance and a cure.
Liz was given the OK by her Doctors to go to Mason's Red Rhythm and Boom on Fri. and she is so excited. We will see you if you go but if not, have a wonderful 4th of July.
Please pray for:
Alex, that he remains as pain free as possible and leaves nothing unsaid to those he loves
Leah's fever breaks and her sores close up
For Lizzy's ANC to reach 750 and to finish out this phase strong.
Keep praying and blessings,