Before updating you on Thomas, I'd like to note that we've added a list of fellow patients on the sidebar. Most of them are other cancer patients we have met through the Allan Blair clinic here in Regina, some are family, friends or people we know of through friends. There are a couple of people whose journey with cancer has ended. In any case, please take a minute to review the list every now and then and send healing thoughts and prayers out for these patients and their families: your efforts would truly make a difference!
One of the names added recently to that list is actually a 'cousin-in-law', for lack of a better term... You may have seen the comment added to yesterday`s post: my cousin Carla just let us know that a young cousin of hers on her mom`s side of the family has also just been diagnosed with Ewing`s Sarcoma. (Carla and I are related through her dad`s side of the family.)
Her cousin is 11 years old - they started treatment October 9 and her hair has already started to fall out. It`s hard to believe that one person could be connected with 2 different Ewing`s patients, especially when typically only 30 people in all of Canada are diagnosed with that type of cancer in any given year. My heart hurts for this family and we know only too well how overwhelming this time is for them. They live in Calgary and she is being treated at the Alberta Children`s Hospital. I imagine our paths will cross when Tom goes back for stem cell transplant after chemo in Regina is all done. We will keep her in our thoughts and hope for a full recovery for her as well.
After Chemo 8, Tom's counts dropped much more quickly than usual. The main counts we are watching are:
Hemoglobin: 99 as of this morning
Thomas typically needs red blood cells at 100 or lower, as he doesn't do very well at lower levels. Red blood cells transport oxygen through your body, and without enough hemoglobin, a person will be lightheaded, tired and weak. They crossmatched his blood today, and we will go back tomorrow morning. They'll transfuse 2 units of blood, and so that should keep us busy most of the day on Friday - each unit takes 2.5 hours or so. Then we`ll go back on Monday to check his counts again.
Platelets: 19 this morning
Below 20, patients are at risk for a variety of side effects - their blood will not clot, they will be prone to nose bleeds (he had a mild one this morning), and bruising. While waiting for the crossmatch, they infused Benadryl through the IV to prevent an allergic reaction. Then, they transfused one bag containing 5 units of platelets. Fortunately, there was no negative reaction this time. (not counting the slightly sour look on his face in the above picture!). The platelets are kind of pumpkin coloured, I guess, and are dripped in really fast simply using gravity - the bag only took about 15 minutes to infuse.
Neutrophils: 0.3 this morning
This means he has essentially no white cells - the ones that fight disease and infection. Consequently, he cannot go to any public places - such as the play at Luther or school or the mall or....well, you get the idea. People can visit us though, as long as they are 100% healthy. It's too bad, we were hoping to get to the play on Thursday night because we thought his counts would still be high enough - usually he does good until 7 days after being discharged.
But obviously his bone marrow has already been pretty well depleted by the chemotherapy. One bit of good news today though: there aren't any signs at the moment of blood in the bladder. BUT that does NOT mean he is off the hook now to keep his fluid intake up! He needs to drink at least 8 big glasses of fluids per day - be it milk, pop, water or iced tea. If he wants his bladder and kidney to function well after all this treatment is done, he needs to take these instructions seriously. So if you are hanging out with Tom, you can help me by
We also met with Dr. Tai, the Radiation Oncologist while we were at the clinic today. Radiation is scheduled to start next Thursday, October 29th. She went over the plan for the coming weeks with us and the anticipated side effects.
He will still need to come to the clinic to check blood counts at least twice a week. At any point in the schedule, radiation will have to be delayed if his platelets fall below 75, or his neutrophils fall lower than .75. They hope to keep his counts above these levels through transfusions. Treatments could also be delayed if he should get an infection or sick with any secondary issue. To help prevent H1N1 (a.k.a. swine flu) from being a factor, he and the rest of the family will get the vaccine as soon as it is available. In his case, his neutrophils have to be 1.0 or higher and he has to be feeling well before he gets the flu shot.
There will be 33 radiation treatments when all is said and done. He'll be receiving 5500 gy units of radiation each day for all but the last 8 treatments, for about 10 minutes to each side of his body. Apparently this is actually a fairly low dose of radiation, relatively speaking. They try to balance the need to keep the radiation levels high enough to kill the cancer cells, but no higher in order to avoid the risk of secondary cancers later in life. It's only on the last 8 treatments that the levels will be somewhat higher. She didn't feel there was a significant risk of nerve damage or impairment of movement, but it does depend how sensitive his body is to the radiation. She stressed that it is very important that he drink at least 750 ML 1 hour or less before each radiation treatment. If the bladder is full, it will be less likely to sustain damage during the radiation.
Anticipated side effects: fatigue, skin burns, loss of muscle tone, and nausea. It is also fairly likely his growth will be affected - he will not likely get any taller than he is now (5' 10"). Because the cancer had already decreased bone density, and because his body has been and will be subjected to more chemotherapy and now radiation, the bone density in both legs will be significantly impacted. When bone density is lowered, a person can suffer broken bones much more easily. We need to make sure he is taking calcium together with vitamin D (the vitamin D helps your body absorb the calcium) from now on. Later on, we may look into physiotherapy to help him regain muscle tone in his legs. Throughout the process, it will be important that Tom stays as active as he can.
To help counteract the bone loss, I bought Ultra Tums - they are chewable and have 400 MG of calcium in each tablet - as well as gummy vitamin D, and a gummy multivitamin. (Tom is getting very tired of swallowing pills!) Apparently lots of people feel this way, because all these chewable items are formulated for adults!
The radiation treatment times will vary - unfortunately - so are likely to cause more disruption with his school schedule even if he has no side effects at all. Although it is clear there are still plenty of challenges ahead, we have faith that he will come through this phase and all will be well. We`ll focus on praying that his body will be strong, his good cells will be protected, the cancer cells will be eliminated, and that any side effects will be minor.
Signing off for now - hope you all have a restful and relaxing weekend.
Thank you all for checking up on us and thinking of us,
Thomas` Mom
