Tyson's Brave Battalion

Tyson's Brave Battalion
Things don't go wrong and break your heart so you can become bitter and give up. They happen to break you down and build you up so you can be all that you were intended to be.” ~Samuel Johnson

Sunday, January 29, 2012

Maintenance Day 6

Today is Ty's last day of his first round of maintenance steroids.  It has been really interesting to see him react to the 6mp/steroid combo.  6mp makes him kind of nauseous and prefer bland food.  Steroids usually make him crave salty foods like eggs and cheese, but we didn't see a lot of that this week.  He still mostly ate lucky charms and 'turkey sandwich without the turkey' and pancakes.  Steroids also tend to make him super irritated and have long crying spells but with him only taking them for five days this time we didn't see a lot of that. 
Wherever I was this week, so was Ty...here we are playing Mario together on the DS's connected
For the most part he was clingy and tired all week, wanting to sit on my lap a lot while he watched tv.  He went to bed really early a couple of nights, like at 6:30, and there were a couple of times where we had him take his medicine half asleep so he wouldn't miss it.  He has been really good about taking it though and he hasn't thrown up since that first night (tuesday).   Friday we took the kids out of school and made a family trip to Utah to go get Brady's credit card.  We went to the Airplane museum at Hill Air Force Base, went to Red Robin for lunch and then stopped by to play with cousins at my sister's house before we drove home.  It was a fun mini vacation!
See how his eyes look sunken?  That's his new baby cousin by the way...isn't he cute? : )
You can kind of see the red around his eyes in this one...weird
The last three days or so he has had pink around his eyes and his eyes have looked sunken and with his skin being kind of pale it is really a strange ghostly look.  I was worried that he might be getting dehydrated but he seems to be drinking fine.  I tried to take a picture but the pictures don't really do it justice.  I'm anxious to see how he does as the steroids wear off.  I'm hoping that he'll perk up a little and that the ghostlyness will go away.  In other words I'm hoping all of that is from the steroids and not from the 6mp cause he will be taking 6mp every day for the next 2 1/2 years and if this is how it makes him feel I'm not very excited about that. 
I just have to keep reminding myself that this is saving his life and keeping his leukemia from coming back so I won't be sad that he has to take this crap for so long.  I hate it and hate what it does to him...but I'm so thankful for it at the same time. 
He got up one morning and wanted to watch tv. I put him on the couch and he fell right back asleep
Sleeping on me at Red Robin...the airplane museum wore him out : )
Hoping his ANC is still pretty high cause we haven't made him wear his mask very much.  We are still doing lots of hand cleanliness though, I really like not getting sick : )

Tuesday, January 24, 2012

Maintenance Day 1, Side effects list, Puketastic!

Finally made it to maintenance!  Tyson got randomized to Arm B of treatment which is the protocol that has vincristine and a five day dexamethasone once per month, methotrexate in the spine once every three months, and a double dose of methotrexate once per week.  In other words he got the arm with the highest possible dosage of everything.  In a way I am relieved because hopefully that reduces his chances of having a relapse, on the other hand the point of the study is to measure whether or not those higher doses are necessary.  They are hoping that maybe in standard risk ALL that they can reduce some of the drugs given during maintenance and therefore reduce the amount of side effects these kids experience (now and for the rest of their lives).  Maybe at the end of the post I'll describe all of that in better detail, along with how round one of taking pills goes at the very end.  Today was pretty routine...
We always start with vitals.  He weighed 15.9kg today (35lbs)!  I put the blood work results in the previous post so the only other thing to note are his liver levels are a bit elevated but they said that is expected for a kid on chemo.  ALT 39, AST 54

Getting ready for sedation...he was really wiggly and funny.  This part always makes him nervous.

Playing 'I Spy with my little eye' with dad (yes, dad had to say the whole phrase) while we wait for the doc

There's an I spy quilt on the wall in this room

Having some 'alligator' after he woke up.  He has to stay lying down for 30 minutes to reduce the chance of headaches from the lumbar puncture

Ty's ANC was high enough to go to lunch.  Playing tic tac toe with dad at Red Robin

It was so much fun that dad left his credit card in the little black folder he he. No worries, they are saving it for us in a safe, but I still get to tease him about it endlessly.  I also got to stop and see and hold my sister's new baby boy while Tyson and dad snoozed in the car.  Soooo cute!
I might be curious about this later, or maybe Tyson will be, and I need to get them in my head somehow so I'm going to list the most common side effects of the drugs he will be on for the next 2 1/2 years.  The lists are really long and though we are most likely to mostly only see stuff from the likely group, the less likely group sneaks in there once in a while.  Hopefully we don't ever see anything from the rare but serious group.  If you are interested in reading this buckle up...you might just want to read the likely and less likely sections.  (update on round one of pills at the end)

Dexamethasone: 1 tablet (2mg) twice a day for five days each month
 LIKELY: Overeating, difficulty sleeping, decreased ability to fight infection, personality changes with mood swings, changes in hormone production causing weight gain especially around the abdomen and shoulders, puffy cheeks, muscle weakness and make your body less able to deal with stress, pimples (probably don't have to worry about that one) : )
LESS LIKELY: Damage to the joints, red face, fluid retention, wounds don't heal as well, slowed growth, upset stomach with heartburn, stomach ulcers, high blood sugar, stretch marks and easy bruising, abnormal uric acid in blood, increased pressure in the eyes, high blood pressure, lessening of calcium in the bones making them more susceptible to fracture, cataracts, headache, dizziness, kidney stones
RARE BUT SERIOUS: Inflammation of the pancreas, stomach and intestinal tract bleeding from ulcers, infections, increased pressure in the brain which can lead to difficulty seeing, pressure in the eyes and headache, bone fractures, serious changes in mood, personality and/or severe depression

Mercaptopurine (6mp): 1 tablet (50mg) once a day every day
LIKELY: Fewer white blood cells, red blood cells and platelets in the blood. A low number of red blood cells can make you feel tired and weak, A low number of white blood cells can make it easier to get infections, A low number of platelets cause you to bruise and bleed more easily.
LESS LIKELY: Loss of appetite, nausea and/or vomiting, diarrhea, inflammation and/or sores in the mouth which may look like thrush, red itchy rash and/or hives, darkening of the skin, elevation in the blood of certain enzymes or bilirubin found in the liver which may mean liver irritatino or damage, hair loss, high levels of uric acid in the blod which could damage the kidneys, a feeling of extreme tiredness or weakness or not feeling well, Absence or decrease in the number of sperm which may decrease the ability to have children.
RARE BUT SERIOUS: Inflammation of the pancreas which can cause sever abdominal pain, Inflammation or scarring of the lungs which could lead to chest pain or discomfort and shortness of breath, Damage to the liver which can lead to inflammation and or scarring which could lead to a yellow appearing skin, and fluid collection in the stomach which makes it look larger, A new cancer or leukemia resulting from this treatment

Methotrexate when given by mouth:  10 tablets (2.5mg each) once every Thursday
LIKELY: High levels of liver enzymes in the blood which may mean liver irritation
LESS LIKELY: Nausea, vomiting, loss of appetite, diarrhea, chills and/or fever, inflammation of the intestines which may cause bleeding, sensitivity to sunlight and increased risk of sunburn, fewer white blood cells, red blood cells and platelets in the blood, Learning disability, dizziness, sense of not feeling well or tiredness, drowsiness, blurred vision, rashes with itching or hives, hair loss, inflammation of the hair follicles, acne, tearing and inflammation of the eyes, darkening of the fingernails
RARE BUT SERIOUS: Severe allergic reaction which can be life threatening with shorness of breath, low blood pressure and a rapid heart rate, The rapid death of large numbers of tumor cells which can cause the potassium and phosphate salts and the uric acid in the blood to rise quickly and this could lead to a lifethreatening irregular heart beat or damage to the kidneys, severe rashes which can cause loss of skin or damage to mucous membranes or peeling, redness and pain on the palms of the hands and soles of the feet, Damage, inflammation and/or scarring of lung tissue which may make you short of breath and cough, seizures, temporary damage to the brain such that you may experience headaches, drowsiness, difficulty speaking or forming words, blurred vision or temporary blindness, and decreased reflexes, temporary loss of function or feeling in the lower part of the body, severe damage to brain tissue which over time could lead to difficulty carrying out normal daily tasks or could lead to a coma, imflammation and scarring of the liver, damage to the bone which could lead to arthritis pain and weakness of the bone, inflammation of the heart, fluid buildup around the heart, damage to the kidney

Methotrexate given in the spine: every three months at PCMC under sedation (Versed and Ketamine)
LIKELY: Nausea, Headache
LESS LIKELY: Inflammation of the lining that covers the brain which could lead to a severe headache, a stiff neck, fevers, abnormally high number of white blood cells in the spinal fluid, difficulty learning or thinking clearly, confusion or sense of not knowing where you are, difficulty with speaking, vomiting, rash, sleepiness, a feeling of extreme tiredness, unsteady walk, leg pain, fewer red and white blood cells and platelets in blood
RARE BUT SERIOUS: Similar to methotrexate above with one added, Bleeding into the space in the spine where the injection is given

Vincristine: IV once a month at PCMC
LIKELY: Hair loss, reversible nerve problem that may affect the way you walk or the feelings in your fingers (Tyson calls this crunkily, my feet are crunkily) Constipation
LESS LIKELY: Jaw pain, headache, muscle weakness, pain and bloating in your abdomen, numbness and tingling, wrist or foot drop, drooping eyelids, double vision, difficulty seeing at night, hoarseness of your voice, abnormal walk with foot slapping, difficulty with urination or increase desire to urinate, dizziness and low blood pressure when you stand, abnormal hormone function which may lower the level of salt in the blood, a mild drop in white blood cells, red blood cells, and platelets in the blood
RARE BUT SERIOUS: Complete stoppage of your intestinal activity which can result in intestinal blockage, If the blood leaks out of the vein when being administered it will cause damage to nearby tissue, seizures, vocal cord paralysis, difficulty breathing, inability to walk, decreased ability to hear clearly, damage to the nerve to the eye, in combination with other chemotherapy drugs damage to the liver which can lead to inflammation and/or scarring which could lead to a yellow appearing skin, and fluid collection in the abdomen which makes it look larger

WHEW!  That is a lot of stuff!  I like to type it out cause it helps me have it in my brain to recollect if something does happen that I need to be aware of.  He also takes Septra two days a week which is an antibiotic.  And that's my medicine alarm on my phone so I need to go get round one of pills...

ANNNNNNNNNNND so round one of taking pills tonight.  I was trying to be really excited and have him show dad how good he takes pills cause it has been a couple of months since he took any.  He tried to take the bigger one first (6mp), couldn't get it down so after three tries he took it out and tried the little one (dex).  He got it down fine and promptly vomited all over the kitchen floor (whew thank goodness we were in the kitchen).  Sigh, purple gloves on and boy does the kitchen stink now, but the floor is super clean!  We'll try them again in a little while.  Hoping and praying it works, it isn't an option to just skip the meds. : (

Monday, January 23, 2012

Starting Maintenance for Real Tomorrow!

ANC 1200!  Woo hoo!  and with normal platelets (258) that means we are finally starting maintenance tomorrow. Sigh.  It was fun to be 'normal' for a couple of weeks. : )  He is on a clinical trial so we find out tomorrow which treatment plan he gets randomized into.  We'll post tomorrow details of the treatment plan and how his day went.  WBC 3.5, HGB 13, HCT 37.5

This is normal right? : )

Wednesday, January 18, 2012

American Cancer Society

WARNING!! SOAPBOX ALERT!!  Please please read this...but I understand if you don't.  If you don't want to read the whole thing just do ONE thing for me...just one little thing.  Consider carefully what cancer organizations you choose to be involved in and donate to. 

So those of you who follow this blog know that last year we went to the American Cancer Society Relay for Life held in our town.  I even donated $25 and signed Tyson up as a survivor and he got a cute little purple survivor T-Shirt.  It was kind of a nightmare.  It was pretty hot that day and they had the survivors inside the high school for a significant amount of the time which was really really nice.  When it was time for the survivor lap, or so we thought, we all went outside and were seated for a nice but looooong program and auction before the lap.  Tyson fell asleep on my shoulder and we left before the lap started.  Even so, I was inspired by the large number of people attending the event.  I thought it was a great thing.  I still think it is an okay thing for adults, it gives them some recognition for the fight they endured, and gives family members an active way to grieve for their lost loved ones.  I will NEVER donate money to that organization again.  I was dissapointed after the Relay to find out that the ACS donates about 1% of their donated funds to Childhood Cancer research even though they often use children in their advertisements. 

Now that I have seen their true views on childhood cancer they are number two on my hate list.  Topped only by the Susan G. Komen foundation who actually SUES other cancer charities who inadvertently use their phrase "for the cure".  Click on that to see the article. 

Let me explain:

When Ty was diagnosed one of the things I started to notice is that the majority of childhood cancer advocacy groups were started by groups of parents of children with cancer.  I, like many other people had no idea there were so many children with cancer.  I assumed all children with cancer were referred to St. Judes and treated marvelously thanks to the many celebrities who support it.  I don't think it is something most people want to think about unless they are thrust into the childhood cancer world so people are largely ignorant about the terrible facts of childhood cancer.  AND they are misled into thinking that if they are donating to groups like the ACS that they were also helping children.  Research on adult cancers does NOT contribute to Childhood Cancer treatment! 

Bald and Beautiful Barbie came to facebook and FINALLY there is something bringing attention to Childhood Cancer that is getting attention from the media worldwide.  We can't get more funding for Childhood Cancer research unless people are actually aware of just how devastating and underfunded it is.  I can throw facts and figures at you all day and make this a much longer article, but for now I will just refer you to places that have already compiled facts like that. You can click HERE if you would like to know more about Childhood Cancer statistics and the percentages of funding Childhood Cancer receives.  About the Barbie, personally I don't really even buy Barbie merchandise so if they make one great, and if they don't that's okay too.  If Mattell makes it and donates some of the proceeds to St. Judes AWESOME!!  The point is, it is getting attention which hopefully will bring more awareness.  Is it really fair that there is pink everywhere when the survivor rate for breast cancer is 99%?  The survivor rate for children is 78%!!!  And most of those children will live the rest of their lives with health problems as a result of the harsh treatment they endured.  The 'medicine' they use to treat childhood cancer causes cancer!!  I'm not allowed to touch Tyson's pills, they are considered hazardous material, yet I have to make him swallow them?? Anyway, I'm drifting off of the subject.

So just to PROVE how ignorant the American Cancer Society really is on Childhood Cancer they released an article about the Bald and Beautiful Barbie. They promptly removed it and apologized the next day after an incredible amount of people responded negatively to it.   Dear American Cancer Society, apology not accepted now that we know your true opinions about how rare and unimportant Childhood Cancer is. You can see the original article below and judge for yourself.  You can read some responses to it HERE.  Personally I am irate that they would belittle the grassroots efforts of an organization trying to help their daughters cope with the heinous effects of cancer. 

Bald Barbie Demand is an Over-Reach
Posted on January 13, 2012 by asbecker
You may have seen in the news that a Facebook campaign is underway to pressure Mattel, the maker of Barbie Dolls, to manufacture a bald Barbie. Cancer is one of, but not the sole reason for this campaign. The group’s Facebook page notes,

“We would like to see a Beautiful and Bald Barbie made to help young girls who suffer from hair loss due to cancer treatments, Alopecia or Trichotillomania. Also, for young girls who are having trouble coping with their mother’s hair loss from chemo.”

To the extent that this effort is about fighting cancer, we should ask ourselves what it accomplishes, who would benefit, and while we’re at it, how about asking if a bald Barbie could in fact do more harm than good for kids and parents, not to mention Mattel.

In a world already littered with cancer totems such as rubber bracelets and pink everything (a limited number of which are from ACS initiatives) , do we need one more thing whose function is to “raise awareness” about cancer? Is raising awareness worthwhile? Over at Mary Tyler Mom, who herself is the mother of a child who died from cancer, the answer is a resounding “no.” She makes the excellent suggestion that a donation of $10-$20 to support cancer research would make far more of an impact than buying a doll.

We know that funding more research is key, and every dollar helps, but who would benefit from sales of these dolls? Would it really be about fundraising?

The downside to raising awareness has been well documented by activists in the breast cancer arena. Awareness of breast cancer, for example, has been so thoroughly achieved, and many women are so afraid of the words breast cancer, that about one in 20 who are diagnosed with LCIS, a condition that may lead to breast cancer, are choosing bilateral mastectomy; the surgical removal of both breasts.

This isn’t to say that awareness doesn’t have an important role in defeating cancer. It can be incredibly important when it comes to informing people about ways to reduce risk or about getting recommended screenings regularly. But there may be better ways to attack childhood cancer. Just like radiation and chemotherapy, awareness must be deployed thoughtfully and carefully.

Childhood cancer is exceedingly rare. I would also argue that cancer is rare among the age group of women likely to have daughters young enough to play with Barbies. Women have about a one in 50 chance of developing any kind of cancer before the age of 40 . Which brings me to the claim that bald Barbies can help improve the self-image of little girls who are faced with having lost their hair, or seeing their mothers lose their hair. If they are mass marketed, many of these dolls will end up in the hands of girls who luckily aren’t likely to be touched by cancer in themselves or their mothers. But could they end up being terrorized by the prospect of it in a far outsized proportion to their realistic chances? There is no reason to create this sort of fear. It’s why we don’t see advocates calling for lightning strike dolls.

My final concern is the no-win position Mattel finds itself in. Last year the company went above and beyond, and made one bald Barbie for a four-year-old who was going through chemotherapy. Now the company risks a severe backlash of ill will if it does not accede to the demands of the social media mob. After all, what is more sympathetic than a little girl with cancer? How could this corporation be so unfeeling as to not make the major investment required to put a new product on store shelves? What happens when the next group demands a custom Barbie to represent its social concerns?

Sadly, some 1340 children under age 14 are projected to die from cancer this year. Each one is a tragedy, and they and their families deserve sympathy and support, but it is critically important to pull back from this exercise in consumer bullying and ask whether the need this movement is rising to meet is as big as imagined, and whether it will result in any meaningful support reaching those who need it.
End of Article

I could go on and on about the awfulness of this article.  It belittles the need for Childhood Cancer advocacy.  We live in a corporate society so if that is a way to raise awareness and funds for cancer research how is that a bad thing?  If there are better ways to attack Childhood Cancer then why hasn't the American Cancer Society done anything to implement those 'better ways'?  The problem is the majority of the parents of children with cancer are financially and emotionally drained and do not have the means to 'attack Childhood Cancer' like your organization does.  Now that we (childhood cancer parents) are finally getting some attention the corporate might of the American Cancer Society is releasing statements against it??  Really???  Do you really believe that a bald Barbie would terrorize young girls??  Wouldn't it instead reduce their fear of befriending their bald classmate?  I would hope that the backlash you received from writing this article will prompt more than an apology.  How about saving the children first?  If we were on a sinking ship wouldn't you put the children on the lifeboats first?  Children with Cancer are on that sinking ship, so why American Cancer Society are you only allocating 1% to them??

Monday, January 16, 2012

Maintenance Delay

Ty doesn't start maintenance tomorrow after all.  His ANC is 500!  I am super surprised cause it has been almost three weeks since his last chemo.  We were assuming he would be back to normalish right now which is why we let him go to primary yesterday.  Just goes to show you can't really have expectations with this kind of thing cause their bone marrow does what it wants and is different for every kid.  At first I was kind of freaking out cause the preliminary results before they did the manual count was 300.  My first thought was relapse...but now that I've seen the other numbers I think that isn't likely, he is just still reacting to the chemo.   HCT 33.6, WBC 2.3, HGB 11.8, PLTS 273 
We'll find out more tomorrow about when his next CBC will be and that will determine when his appointment will be. 

Sunday, January 15, 2012

First day of Primary!

Happy Sunday! No tv on Sundays at our house except for church movies...so I think the kids are doing an experiment right now on who can break a bone first...they are sliding down the stairs in sleeping bags.  Good thing we only have half size sets of stairs : ) 
Happy to announce...

Ty went to primary (Sunday school for kids) today!  He has been nervous about going back cause it has been so long since he has been.  And let's face it, going home right after Sacrament meeting instead of going to two more hours of class is pretty fun to a 3 year old : ) The leaders had him come up to the front and welcomed him back and he was pretty excited about that.  Brady went with him to the first part, and then he got to take his mask off and go by himself to his class with just the kids his age.  He took the hand sanitizer with him. : )  His teacher said he was good and he was in a good mood when I picked him up.  I think he enjoyed it!  yay!  Even Merin was excited to go to class with me and was pretty good considering she is 2.  It was really nice to be in Sunday school and Relief Society (class for women).
Not sure about next week...he'll be back on steroids : (  but we'll see how he is feeling and just kind of play it by ear. 

Angry bird twins : )

Still enjoying our break. We go back to PCMC to start maintenance on Tuesday the 17th.  He is still on a lucky charms/ bread with mayo streak but is feeling pretty good I think.  It has been 18 days since he got chemo.  His ears are pink and he's playing with the other kids and just seems to be pretty normal right now.  I've been weaning him off of constant tv lately, we get in the habit of that when he doesn't feel good.  It's fun to watch him play. 

It has been interesting to watch his different phases of food likes and dislikes and cravings through this whole thing.  Chemo and steroids do weird things to your tastebuds and cravings.  The other day I ordered pizza and while we were waiting he asked if he could have some lucky charms.  I looked at his skinny little self and said, 'Okay, but only cause you have cancer you little spoiled guy'.  He replied, "I'm four, I'm a big spoiled guy" he he : )  When the pizza came he cut up his piece with a pizza cutter, took all of the cheese off, and then ate a piece of bread with mayo on it.  Certain foods that he craves at some points in treatment he can't get himself to eat in other phases.  CHIPs...Cancer Has It's Priveleges... one of them is that you get to eat what you want, when you want. 
A three year old boy from Bountiful just passed away this week from A.L.L.  We never met him but know of him through an online cancer fighter group.  Our hearts break for their family, and it brings fresh the reality of what Tyson is fighting.  This boy was almost done with treatment and relapsed, the Leukemia took over too strong and too fast and there was nothing the docs could do about it.  It's a blessing and a curse, having the possible death of your child on your mind really reminds you to hug and cuddle and love..and not sweat the stuff that doesn't matter.  It sounds a little dramatic and even a little crazy cause he is doing so well with his treatment, but the painful thoughts, tears, and what-ifs still cross our minds occasionally.  Thank the Heavens that we have the gospel of Peace to lean on cause without that comfort and faith in the Lord I think I would literally go crazy.

On a lighter note...  Ty loves stories...in the top clip he is 'reading' one of his favorites.  (not sure why the camera wouldn't stay focused...sorry about that.)  In the bottom clip he sings the ABC's with Merin.  

Sunday, January 8, 2012

Fever and Sunday Meetings

Just kidding, Ty does not have a fever!!  We have been waiting for one since the holidays, especially since his little sis is just getting over handfootmouth disease which causes a fever, but nope, no fever.   He was also around a little cousin during the holidays who was diagnosed with scarlet fever and impetigo the day after they arrived home.  So we weren't too worried about it, just prepared to head up to the hospital when Ty got one of those two things (handfootmouth or strep) but so far so good!  He has been eating bland food lately, his favorite is 'turkey sandwich without the turkey', otherwise known as a piece of bread with mayo on it.  That and lucky charms seem to be his staple lately, I know! healthy!!

Ty hasn't been to his primary class (sunday school for kids) since he was diagnosed in April.  Not only have his immunities been too low for it, his disposition at times is also not conducive to a couple of hours with a teacher and other kids.  Soooooo  I was really hoping that now that he has a little chemo break and starts maintenance in a few days that he could start going to primary again.  The bad thing about a break is you have no idea what his blood counts are other than the vague clues his body gives you.  The past couple of days he has been clingy and cranky and tired and his lips were starting to chap last night. We are at 10 days from his last dose of chemo (which generally, if it is going to drop counts takes 7-10 days)  Today his ears are white.  I know that's sounds funny to gauge his paleness by his ears, but really he is always pale, his red count is always low so it's really hard to gauge just how low it is getting.  The whiteness of his ears is what initially got me to take him in and that led to his diagnosis.  So ever since then I have kept an eye on the whiteness of his ears.  It seems like his counts have to be pretty low for his ears to go white.  So that and his general clingyness and tiredness made me think maybe it isn't time yet for him to go back to primary.  I was a little dissapointed.  I'm tired of missing so much of my own meetings and though it may be a little come and go anyway because I'll have Merin in my meetings with me (she can't go to nursery because she will be more likely to bring sickness home to Ty if she does), it will be nice some day (hopefully in the near future) to be able to just go to all of our Sunday meetings.  Funny how you can miss something that has always seemed kind of mundane, routine, and even hard to sit through sometimes. : )

I wanted to bear my testimony today, but my mind was blank and I didn't feel like I had much to say.  I was feeling kind of numb, and I was thinking about how disconnected I now feel sometimes.  By the time I had the courage to get up the meeting was over.  When we (me Ty and Merin) got home from Sacrament meeting we watched the Reflections of Christ video.  Ty was asking me about some of the pictures and as I was trying to explain them to him I was suddenly aware of how much that means to me.  I didn't feel numb anymore and we watched another video that my niece and nephews are in called 'Treasure in Heaven~ the John Tanner Story'.  I prayed this morning that I would be fed today and so I was sad when we had to go home before all the meetings were done.  My prayers were answered anyway and I feel fed and uplifted and love the perspective of consecration and faith that that video teaches.  There is a trailer for it HERE.  And you can find the 20 minute movie at deseret book or on Disc 3 of the Doctrine and Covenants and Church History Visual Resource DVD's. Anyway, I highly recommend it!  I would embed it here if I knew how, but you can see the Reflections of Christ one anyway...Happy Sunday! : )

Nothing new in the whole cancer thing, Ty's next appointment is on the 17th if he makes counts (ANC 750, PLTS 75)  That is the day he starts maintenance.  I'm not really as excited about this phase as I thought I would be.  The reality is he will still be on chemo..and steroid pulses.  The main chemo he will be taking daily is called 6mp or mercaptopurine.  He was on this one for about a month in May.  His counts were good at first on it but he ate bland foods, said 'what's that smell' a lot and after about three weeks his counts tanked and stayed low for several weeks.  He will take that pill daily for the next 2 years and 7 months.  He will also take methotrexate once per week which doesn't seem to have too much of an effect on him in a low dose, and then the steroids...the devil pills.  We don't know yet how often he will do five day pulses of these, it will either be once per month or once every three months.  The A.L.L. moms who are ahead of us in treatment say that maintenance is a lot easier than the first phases but I am starting to wonder if that is just because it is for so long that they are just used to it.  I really don't have a lot to complain about, Ty has done really really good!  His treatment is so fine-tuned that they know what to give and how much of it and it is so much milder than what a lot of the other cancer fighters go through.  I am REALLY really thankful for CureSearch and the Children's Oncology Group who have come so far over the last few years in Childhood Cancer Research.  And So thankful for the gospel and for your prayers in Ty's and our behalf.  I feel guilty that we are so blessed!!  And I have gone on and on and on in this post so if you are still reading good job and thank you for your perserverance!!  ; )  I just want to shout to the world that peace can be yours in the middle of anything if you know where to turn. the end, or as Tyson would say 'dee end, you can call it da end or dee end.' He loves that he can 'read' those two words at the end of Tom and Jerry. : )