ETU Day 7

Well tomorrow we will start with a new Induction phase.  Shelley and I are starting to wrap our minds around the path involved but it is very hard.  One of the things that helps us is doing the research about what is happening and what may be in story for Nathan.  One of the things we keep getting asked about is how people go about being a bone marrow donor.  Only immediate family will be tested specifically for Nathan but we do encourage everyone else to sign up for OneMatch. 

"OneMatch Stem Cell and Marrow Network is responsible for finding and matching volunteer donors for patients who require stem cell transplants. Fewer than 30 per cent of patients who need stem cell transplants find a compatible donor within their own families. The rest rely on those who have volunteered to donate stem cells to anyone in need."

The other question we are getting quite a bit is what is the difference between stem cell, and bone marrow transplantation and the answer is nothing really.  They both are looking for hematopoietic or blood-forming stem cells.  The difference is there are two different way to collect the hematopoietic stem cells, one being through the bone marrow (BMT) and the other being through peripheral blood (PBSCT). Here is one of the best definitions of peripheral stem cell transplantation I have come across.

"A method of replacing blood-forming cells destroyed by cancer treatment. Immature blood cells (stem cells) in the circulating blood that are similar to those in the bone marrow are given to the patient after treatment. This helps the bone marrow recover and continue producing healthy blood cells. Transplantation may be autologous (an individual's own blood cells saved earlier), allogeneic (blood cells donated by someone else), or syngeneic (blood cells donated by an identical twin). Also called peripheral stem cell support."

Nathan will be in line for an allogeneic bone marrow stem cell transplantation.  Allogenic means that Nathan has to get the donation from another host, either related or unrelated.  There is an advantage to this type referred to as "graft-vs-leukemia" effect where the new healthy cells will attack any residual leukemia cells.  The disadvantage is called "graft-vs-host disease (GvHD)" where the new cells will actually attack Nathan's body.

But first, we have to get into remission, and that is where our efforts focus starting Monday.  Please keep the prayers coming.

ETU Day 5

Well let's start it off with some good news.  Nathan got his report card yesterday as he wasn't going to be at school for the actual last day of class today.  Nathan did quite well, as he improved his marks to mostly 3s with 4s in all the Math subject.  He is also quite proud of his 4 in Drama/Dance though his dancing is a lot like Uncle Rodney!  Maybe Rod actually isn't that bad ;-)  Nathan made an agreement with his mom that if he pulled all his 2s up to 3s that they would go half and half on a new DS game - I guess he and Shelley are going shopping!  Nathan really did work hard to catch up after missing essentially the first half of the year.

Carter also did quite well on his report card today.  4s across the board for him and a glowing report from his teacher.  We can't express enough just how proud we are of our boys, they put in the work to get the results.

And speaking of results, if you haven't seen them yet, you should check out the results from our family picture shoot in the gallery.  We've been trying to arrange with the lovely and talented Erin Francais for almost a year now, and for once things finally lined up for us.  I got the boys hair cut on Tuesday and on Wednesday both Shelley and Erin had the same thoughts in the morning - it has got to happen to today.  Thankfully Erin took time out of her day to come and shoot some pictures for us and she did an absolutely wonderfully fantastic job - thanks Erin!  Oh, and you might have noticed the haircuts on the boys... no, they were not mother approved but lucky for them they were with their Dad on haircut night.  Even our talented hairdresser Tracy didn't want to do it knowing Shelley's opinions on that cut in the past but we talked her into it and I think they turned out great.

OK, I know you didn't really come to our blog to read all that but sometimes we need to remember that life still goes on and we have to try very hard to take part in it.  These past couple of days have really made Shelley and I want to retreat and bunker in, hopefully we'll get past that.

We spent an interesting day in the clinic today.  We seemed to be there all day but really all we did was give blood and get platelets.  And even then, we didn't really need platelets, we just got them because we knew we would need them on Monday.  Nurse Andrea talked with Shelley and I for quite awhile today explaining what our next phase will be about and she patiently answered most of our questions and concerns.  We have more questions that can only be answered via a conference call with the transplant center in Calgary but what we do know is:  We start an Induction phase on Monday and they follow the Edmonton A.L.L. Bone Marrow & CNS Relapse Protocol.  (why it comes from Calgary and is called the Edmonton protocol we don't know).  This is a 4 week protocol with an option for two more weeks and is much different than the induction that we had before.  The drugs involved are Prednisone (steroid) which he gets three times a day for 28 days.  The set of IV chemo drugs consist of ARA-C (Cytosine Arabinoside) which is twice a day for the first five days.  He will also get Vincristine every 7 days and Daunomycin (hard on heart) only on days 1 & 2.  In addition to these he also gets three Intrathecal drugs Methotrexate and ARA-C which are the chemo ones and Hydrocortisone which is a steroid.  Last of the chemo drugs, but certainly not least, is the PEG L'Asparaginase but that is the one that Nathan was allergic to so he will be getting the Erwinia L'Asparaginase (blasted leg needles) on days 3, 5, 8, 10, 12 & 15.  That is not going to pretty as Nathan really fought those by the end last time.  The last two drugs that Nathan will be on are Septra to guard against pneumonia and Fluconazole to guard against fungal infections.  And just for fun, he will most likely have a steady dose of Ondansetron while getting the ARA-C to combat any nauseousness.  So were you counting along?  How many was that?  If you said "too damn many!" then you are right!   You would also be right if you said 11 different drugs that Nathan will be one: 6 chemo, 2 steroid, 2 preventative and 1 anti-nausea - that really is overwhelming.

It all starts (again) on Monday; we will be going in for blood work at 7:45 am so that they can have it back before his LP for the triple intrethecal therapy at 9:30.  In between we will be going for an Echo cardiogram in order to baseline his heart function as one of the chemotherapy drugs is quite hard on the heart.  We will get the rest of the chemo drugs scheduled for day 1 (ARA-C, Vincristine, Daunomycin) in the clinic.  After we are done there, Nathan will be admitted into RUH. In order to get the ARA-C twice a day, at 12 hours apart, it has to be done in the hospital.  So for the rest of the first week at the minimum Nathan will be admitted to RUH.  We are hoping to get a day pass so we can leave during the day but that is another unknown just yet.

The point of all this is to get Nathan into remission within 28 days.  There is an option to continue induction for an additional two weeks if he is not in remission yet after the first four weeks.  If still not in remission after those two..... well we just aren't going to go there as NATHAN WILL GET BACK TO REMISSION with all your positive thoughts and prayers for him and through the hard work of the Cancer Center staff.  Thank you all very much for the concern you've shown for Nathan and the rest of our family.

Now do you know why I started this post the way I did??

ETU Day 4

Looking for a new title for these days and I guess ETU will work for now.  Shelley and I met with the staff at the Cancer Center today to discuss our options for treatments for Nathan going forward.  As usual we keep hoping to know *more* but almost every time we are left with almost as many new questions as questions answered.

One of our first decisions today was to choose which center to go to for the bone marrow transplant.  Our center has a good relationship with Winnipeg but we decided to go to Calgary as we will have a better support system there.  The reason we had to choose a transplant center is that they set the protocol for the induction phase.

Calgary would like us to start on Monday instead of Friday so we will learn more about that tomorrow.  Basically what we know now is that we will try to be in remission in the next 4 weeks.  And then we go from there.

We go in tomorrow for bloodwork as they suspect he might need platelets and at that time we should learn more about the next four weeks.

Thank you all for continuing your prayers for Nathan.

In Need of More Prayers

It has been a long time since our last post.  As they say, no news was good news.  Our life was progressing rather normally.  We have been working on the house and yard. The boys played sports when it wasn't raining. Carter and Nathan are both playing the piano and had their recitals.  And we have made plans for a two week camping vacation in June.

Cue ETU.

Nathan's blood counts have been quite low for the past three weeks.  Low enough that he has been off all chemotherapy medication in order to wait for it to come back up naturally.  Dr Ali was concerned enough to take an extra blood sample to send off to the states to see if Nathan was metabolizing the chemo drugs too quickly or just what might be happening last week.  And then, in Nathan's bloodwork yesterday, the damn blasts appeared.  Blasts are one of the shows of Leukemia and that it may be back.  Nathan had a bone marrow biopsy and lumbar puncture this morning and we received the bad news - Nathan has relapsed, the Leukemia is back, this time in the bone marrow and spinal fluid.  Thursday we meet to discuss the plan to get Nathan into remission and then the plan for a bone marrow transplant.  Friday Nathan will start the course of chemotherapy he went through December of 2008.

The great news is Nathan feels great, played baseball in the back yard last night with his brothers, Dad and Uncle Perry, and after his bone marrow biopsy, convinced Arron and I to let him go to school for the afternoon.


Therefore, we need a LOT OF PRAYER.  We were positive about not going down this route and yet here we are.

Please pray for Nathan and the rest of our family.

Maintenance Day 114

114 days into maintenance and the optimal goal of consistently low (not extremely low, or high, or moderately low but just right) blood counts has yet to be achieved.

Nathan had treatment yesterday at the clinic and so had further blood work. Platelets were good at 184, Hemoglobin was 115, RBC was 4.21 but WBC was 8.3 with neutrophils of 7.8 - the differential showed lymphocytes of 0.4 and monocytes of 0.1. So now we are at the other extreme of the neutrophils, beyond the normal range of 1.5-7.5.  The first thing I think when I see neutrophils that high, when he isn't on steroids, is that Nathan's body is trying to fight something. Its worrisome. You would think that with an increased army of good cells it would be a good thing, but too many cells isn't.  We are scheduled to go back to the clinic in a week for further blood work.  Nathan remained on the 3/4 dose of his methotrexate and 6mp this week and started another week of steroids last night.  He was happy to have KFC and rootbeer floats for dessert.  By 8pm he was in bed tonight as he was tired.

With Nathan receiving chemotherapy we have not been to the dentist with him since spring of 2008. Unfortunately we are going in tomorrow out of necessity. It will only be for an examination as he has a tooth that is bothering him.  In order to have it filled we will need to go get blood work first to make sure the platelet and neutrophil levels are in a high enough range before having any work performed.

Aside from the ongoing worries of Nathan's health, life has been good.  We had a great weekened with hockey, play dates and a visit from Auntie Lorrie. Arron and I actually took the opportunity to go on a date and went to see the movie "The BlindSide".  Yesterday Justin really wanted to go outside to build a snowman. Since our backyard is pretty much mud with a little snow and a soft rink, we walked to the park a few houses down.  I think the boys had more fun throwing snowballs at me than the actual making of the snowman.  We were all soaked by the time we came in but had a lot of fun.

Carter and Justin are well. Carter had his post-op checkup today and everything has healed well from his surgery. Justin is as sweet as sweet can be. He has started saying to me "I loved you first mom" and if I say I loved him first as a baby he tells me he loved me first when I was a toddler.  Not sure where this has come from but I will keep it!

Carter is doing extremely well in school and with his music. He is learning The Star Wars theme on piano and enjoys it.  Nathan has improved greatly with his reading and overall interest in school and his lessons with piano as well.  I find the week we are on steroids though is a week of break from work at home. He is just too tired which is understandable.

All of the boys are ready for spring to arrive.  All 3 are registered for soccer, Carter also wants to play flag football and Nathan wants to play baseball.  We will have a busy spring but are looking forward to it.

Maintenance Day 93

Friday we went back to the clinic for blood work and with it being Day 5 of steroids, we were in a full blown hormonal storm. After an hour of coaxing Nathan to go into the nurse's room to be accessed I called Arron. Nathan was having nothing to do with being at the clinic and I was the meanest person in the world for having brought him there.  The thought of going to school for a Valentine party and an afternoon of Olympic fun didn't even bring a smile to Nathan's face. And as quickly as the storm came, the storm passed. He forgot all about the clinic as soon as he walked into the class room as he showed a grin from ear to ear. Then later in the evening the tears came when he was telling us the reason he didn't want to be at the clinic was because he was too excited about going away for the weekend. (Go figure.) We made it through another week of those blasted steroids.  Watching the impact on his psychological being is harder than watching him with the chemotherapy drugs.

But that being said, his WBC went from Mondays blood work of 1.64 to3.39, platelets of 29 to 150, neutrophils of .71 to 2.37 and hemoglobin from 122 to 109.  We headed up to Carrot River Friday night and enjoyed an evening at Julianne & Rodney's.  The father of a good friend of ours passed away last Tuesday and Arron was pall bearer Saturday afternoon.  The boys enjoyed time with Auntie Wendy, Uncle Lyle, and Nick while we were at the funeral. 3 hours of road hockey and muffins as a snack made the kids day. Justin asked what road hockey was and Nathan was concerned about traffic but after we explained it was allowed they were excited to play on the street.  Justin was happy to report that evening that he had made a new friend as the neighbors son and nephews joined the kids in their game. Carter quite enjoyed the game.  Evening was spent with all three sisters and family and had an enjoyable visit followed by the kids enjoying their ping pong table and watching out for Sadie as she tried to get to the ball before they did.

Since the weather had warmed up we headed out to the cabin Sunday and had an enjoyable day of fishing and toboganning. It seemed to take forever to get the cabin to warm up but by the time we were ready to head home yesterday we finally got it to a balmy 23 degrees.  Justin is at the stage where he is so grateful for everything.  He found toboganning to be "awesome" and asked every time he climbed the hill if he could do it again. And Monday, he was so happy to be at the cabin he said to Arron and I "thanks for bringing me to this place". And he is only 3.  Later that day both Carter and Nathan agreed that they wished they could stay longer and that they could tobogan every day but alas a trip to the Cancer Clinic was needed for blood work the next morning.

Arron took the week off to be home with the boys so started the day with a longer than expected trip to the clinic for blood work to determine pill doses.  Nathan was very co-operative today.  Counts were all comparable to Friday's blood work so started on half doses of his pills today for a two week period.  After this a trip to the mall for mini-golf and groceries followed by lunch and play dates for Carter and Nathan and a nap for Justin, the boys rounded out the day with an evening spent on the hockey rink with Arron, our 3 boys and a neighbor boy and his friend having a friendly game of scrimmage.  Arron did a great job on the rink this year and the boys have really enjoyed being out there.  Carter even volunteered to go out earlier today to do his "homework" his coach had instructed the kids to do.  Today was by far the best mood Nathan was in since Friday and a lot more cooperative but it will take a couple more days to get a steady mood back.

Maintenance Day 85

Happy New Year! Its time for a post! Life has been busy with the kids settling into regular routines of school, music, hockey, home work and having friends over so we have been busy.

We have made it through the first 3 month phase of Maintenance and started another round. Essentially Nathan's treatment plan is  planned for a 3 month period and then we repeat it over and over again.  Nathan is doing well. His hair is growing back nicely although I can't quite decipher the color.  He was our blond boy before he got sick and now his hair is not sure if it wants to be dark or light.  Guess maybe the summer sun will help it out when we get there.

After not being at the clinic for 4 weeks, both Nathan and I were apprehensive about returning. Today was the lumbar puncture with Intrathecal Methotrexate.  Nathan wasn't happy about not being able to eat or drink but was the only one scheduled for today so was in by 9:15am and he did very well.  The good news was that procedure went well.  The disappointing news was that the chemotherapy pills Nathan takes daily had wiped out his plateletes and his platelete levels were at 29, with neutrophils of only .71.  With the plateletes being so low, Dr Ali put orders in for a platelete transfusion except there wasn't any at the hospital. So to make the most of a long day, Nathan and I picked Arron up for lunch which was a nice outing.  We returned shortly after 1pm and by 1:45pm the plateletes had arrived from another location.  All went well and Nathan received them well.  We were home by 3:30pm, in time for me to switch boys and take Carter to his hockey game.  It was a great game! Carter had some great plays and scored his second goal of the year (his first was on Friday and Arron saw that one but I didn't) so was great to see.  They lost 3 to 2 so was a very close game.

Since Nathan's counts were so low, all chemotherapy pills are held for the week.  He is one steroids for another 5 days starting today. Lovely little pills those are.  Arron and I know what to expect - hungry, emotional boy at the start followed by anxious, not sleeping, over stimulated boy who one minute will be smiling and happy and then next is crying.  So each Saturday following the 5 days of steroids, Arron and I are glad the last pill has been administered and wait for the come down.  We will return to the clinic Friday morning for blood work and again on Tuesday just to see where he is at. At least these are in and out visits with no wait for blood work or pharmacy.  With plateletes being low and the inability to clot, one would think we would seeing bruising with Nathan but we never do. The symptoms that we can look back now on and see are increased tiredness (although if you ask him if he is tired the answer is always no !), loose stomach and this time around on Sat we noticed Nathan had a bruise on his tongue, right in the middle.  That was an odd one.

Althought the weather was a balmy -19 Arron, Justin, Carter and his friend headed out to play hockey on the rink tonight. Nathan did not participate for obvious reasons so worked on extra phonic sheets with me instead. He has improved greatly with his reading and identification of words.  His attitude towards the school work has improved as well which has been great to see.

With the kids break approaching we aren't sure what we will be doing. Thought we would know today but guess Friday will be a better indicator both for weather and for blood work.