Tag - bone marrow

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Being Stubborn Stops Reason
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Queen for a Day
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Clinical Trial Debate

Being Stubborn Stops Reason

Saturday April 18th, 2008. Hurt Feet.

This has been a tough week. Kayla hurt her feet twice but will not wear shoes. Why are kids so stubborn? When one cannot reason with someone else because of being stubborn the the door has shut to any reason, that is the time to quit trying.

Wednesday Kayla got a mouth sore, it has progressively gotten more painful until yesterday, when she could not eat dinner. I believe this mouth sore showed up because Kayla has not had her supplements for three days prior to the mouth sore. The doctor had guaranteed that Kayla would get mouth sores after every treatment and by the time the mouth sore healed she would be due for her next treatment of chemo. Considering what the doctor said, Kayla has done incredibly well. When I took a good look at Kayla’s mouth sore. She also had small white spots and per another patient these spots are more sores forming. I decided to double the amount of glutamine immediately and so far no sores have actually formed. Of course Kayla did not put up a fight about the glutamine because she wants to get rid of the sores. That at least was helpful.

On the 7th of April a bone marrow was done and the Children’s Oncology Group will not give us the results. No matter how hard I tried I could not get them. Have you ever heard of such a thing? It seems very unfair to put a patient through such a painful procedure and never given them the results! I found this very upsetting.

Kayla has been asking to walk to the clinic and I have been telling her it is too far. I tried to convince her to practice more in the house first. While trying to explain this to her she told me “you don’t want me to walk”.

I lost it when she said this and just started to cry and had a hard time trying not to cry. It was as if the fountain overflowed. I told Bill, my husband, that I am tired of always being the hammer in the family. Bill got it and talked to Kayla and I, about the Leukemia being forced upon both of us. This was such a basic truth that we both felt a lot better. The day ended much better.

Sunday April 19th, 2008. 

We are going to try giving Kayla a protein shake at 11:00 at night to see if this helps the hunger in the morning. The cut off for solid foods is midnight if she is going to have a procedure the next day. Kayla is enjoying her protein shakes and her mouth sore is almost completely gone from giving her the glutamine powder again. Her lips are cracked and peeling, which is a sure sign a sign of dehydration.  I am trying to get her to drink more.

Kayla had a friend come over, so she at least was able to have some fun for several hours.

 

 

Queen for a Day

Saturday April 5th, 2008. www.qfad.org

Kayla had a wonderful day today. A group of ladies came over from Queen For A Day organization. This is a national organization to build the esteem of little girls and they also have something similar for boys. These wonderful people came over and set up arts and crafts for Kayla and Hannah. They also did nails, and makeup. Both children were given feather boas, a beautiful tiara and a wand. How could you not love getting pampered for hours along with several gifts. This was really great! We met Hannah when Kayla was first diagnosed and she has been a source inspiration because she is always running around the hospital laughing. She makes going through chemo look like it is easy.  

Later some friends came over with their four kids and the house was crazy for hours. At one point Kayla was bouncing up and down on a chair saying “I am having so much fun!” It was almost like the old days where we had lots of activity happening.

Sunday 6 April 2008.

Friends came over to play with Kayla and she was busy all day. I have to tell you that visitors are so crucial to us! It makes us feel as if we are part of a normal life. It is like a gift when friends come over to visit. Most people do not realize how consuming cancer actually is. Most days Kayla and I are at the clinic getting chemo or we are at home, with very few options for entertainment. Tomorrow Kayla has to get bone scans, a bone marrow aspiration and x-rays, such a bummer. This is the other reason why visitors are so important, they take our attention off of crappy things!

Monday April 7th, 2008.

Our day started around 5:30 am to get ready for our trip to the clinic and hospital. Because Kayla cannot eat anything until after her procedures, I pack lots of food that she can eat as soon as she wakes up. One of the procedures is a bone marrow. Those make Kayla very sore for days. No matter what the results are of the marrow, her treatment plan does not change at all. Which is why I wonder why she has to get so many. Do you have any idea how huge the needle is? Did you know that they have to push the needle into and through hip bone to get the marrow? It sounds so simple but is actually quite painful. We got back home at 5:00 pm. It was a 12 hour day from start to finish. Kayla weights 60 pounds.

At the clinic one of the mom’s came up to me and told me that lumps showed up in her daughters throat. The mom tried to act normal but you could tell the anxiety level was out the roof. I could feel the worry she was going through waiting to hear the results of tests. Those kinds of wait periods are interminable.

Wednesday April 9th, 2008.

It was a relief to go to the dentist and get a bad tooth fixed. It has been bothering me for a while. The only reason I went is because it was getting bad. Otherwise I would have put it off.

The physical therapist came today and he was very impressed with Kayla’s improvement. He showed us a new round of exercises for Kayla’s legs. We have two months before we start the rough cycle of chemo. This feels like I have a window of time to help Kayla rebuild bone density and overall strength. Right now Kayla is only on three different chemo’s, Intrathecal methotrexate (in the spinal fluid), Peg Asparaginase (leg shots) and IV Vincristine. This is a relatively minor amount compared to the rough chemo, which has eight different chemotherapy drugs.

We watched on TV a guy by the name of Randy Pausch, a professor at a University who has Pancreatic Cancer. He is such an inspiration this guy – going out and telling people to follow their dreams while he is dying of cancer. I am going to buy his book

The next goal with Kayla is to bring her joy as much as possible by doing arts & crafts, cooking, etc. Today we pressed some flowers and she loved it.

Thursday April 10th, 2008.

The cartoon channel is completely insane and Kayla has started to become a monster from watching it. She has been rude, and insolent, until I snapped and told her no more TV. Man she got so upset and cried in her room for a long time. After dinner our sweet girl came back, we hung out together and then Kayla went to bed for the night.

 

 

 

 

 

 

Clinical Trial Debate

Clinical Trial Debate Tuesday 29 January 2008

We were asked to participate in a clinical trial.  We had already signed up for one in the hospital and this is another one.  After many hours of debate we decided against it.  One point of note; it is because of clinical trials that the Leukemia success rates are so high.  Unfortunately with adults the sign up rate in clinical trials is very low.  Twenty years ago a diagnosis of Leukemia was a certain death sentence.  Now because of all the trials that have been done, the cure rate is 87% for the low risk Leukemia’s, this is a major stride in the right direction!  We decided against this particular trial because the patient is placed in a random category, almost like a lottery and there is no choice in what one can choose.  This is why we decided against it.

Kayla’s blood counts are very low today and she will have to get a platelet transfusion.  Platelets are the cells that clot the blood.  Her white blood count was 0.3, red blood count was 7.7 and her ANC was 300.  Because the ANC is only 300 we have to stay in a sort of isolation.  Usually on red blood counts below 8 they do a transfusion but the doctors want to wait and see if her body will produce the red blood cells on her own.

The nurse today tried to get us to agree to do a marrow in the clinic instead of the operating room.  When I questioned the staff about the drugs used in the procedure I found out that State Law dictates the drugs used and Versed is the only one allowed.  The Versed never worked for pain and honestly I cannot see how Versed is better. One forgets but still feels the pain. I think that a drug like that was invented by a madman. Only evil could produce something so evil. Or maybe it was really invented as a biological weapon – I don’t know. What I do know is that it is incredibly cruel to make a person forget. It certainly opens the door to criminal activity as well with forgetfulness being a perfect cover.

Wednesday, 30 January 2008.  Excellent day.  Kayla still had stomach problems so I went to CVS to find out what could be done.  They told me Malox or Tums.  Then I called the clinic to find out if it was okay and they said yes.  Jesus, I do not understand why they don’t tell us this stuff ahead of time, instead of letting weeks of pain go by. Sheesh!  The Malox really helped and Kayla was able to eat two full helpings of the Chef salad we had tonight. In retrospect, I believe the medical staff have to take care of so many details that they cannot remember everything we need to know. This is where research and websites become quite useful.

Some friends came to visit and Kayla had a blast.  Kayla’s school has been so supportive and helpful to us as a family.  Community is a wonderful thing.

 

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