Official Off Treatment Date!!!

FEBRUARY 2014

 February 2014 it is. Which leaves us with 1 Year and 7 months!!! One month before she turns 5.

Can’t believe Mikayla is already 7 months in treatment but we are getting closer to the off treatment date!!!! So excited, can’t wait for the day when they are going to pull the central line out of her chest and she is free to go and move on!

We had the talk with the doctor yesterday about heading into long term maintenance, which will happen after 2 more chemo rounds. Using the doctor’s words, she has done “exceptionally well” throughout the whole intense treatment and they don’t expect anything bad during the rest of the treatment. She is doing pretty good right now and her blood counts were pretty good too (still in normal range) even after the last increase of the methotrexate. They did increase it again yesterday. As the doctor said, there are some kids that handle the interim maintenance way better the second time around as they are generally in way better health.

Now we have to do a lot of thinking, research and praying as we have to make the big decision to stay on trial or not. If Mikayla stays on trial she will head into randomization, which can put her into 4 different arms of treatment.

The first arm is standard care. Mectapurine pills everyday, Methotrexate (20mg) pills once a week, Vincristine every 4 weeks, Steroids every 4 weeks for 1 full week and an LP every 3 months.

The second arm is Mectapurine pills everyday, Methotrexate pills (20mg) once a week, Vincristine every 12 weeks, Steroids every 12 weeks for 1 full week and an LP every 3 months.

The third arm is the same as standard and is just increasing the Methotrexate to 40mg per week. Mectapurine pills everyday, Methotrexate (40mg) pills once a week, Vincristine every 4 weeks, Steroids every 4 weeks for 1 full week and an LP every 3 months.

The fourth arm is Mectapurine pills everyday, Methotrexate (40mg) pills once a week, Vincristine every 12 weeks, Steroids every 12 weeks for 1 full week and an LP every 3 months.

The Mectapurine and Methotrexate are chemo pills, she had both before. The Mectapurine kind of sucks as you can only take it 2 hours after eating on an empty stomach and you are not allowed to have any dairy in your system. Mikayla had it before and it was hard as she sometime wanted to have a night snack and we couldn’t give it to her as she needed to take her meds and she also loves milk, which we weren’t allowed to give her in the evening anymore too. So that will have to change. The methotrexate is affecting her blood counts so they will have to constantly play with the dosage to see how much they can give her as they want to have her counts stabilized for most of long term maintenance.

The Vincristine is the chemo med that is giving her the pain in her jaw and is affecting the nerves, fine motor skills etc.

The Steroids, yeah they are back and a little bit more often than we expected too, but they keep the cancer away so we just have to deal with it. The steroids affect her bones. Because of those meds she sprained her ankle and couldn’t walk for a long time after the first month of diagnosis.

And the LP is the methotrexate chemo med in the back, where she has to go to PDU.

When we look at the treatment plans we definitely must say that we expected less of everything but it is a less intense treatment than what she had up until now.

With the trial they are trying to find out if they can give the kids chemo less often (arm 2 with the Vincristine every 12 weeks and steroids every 12 weeks) and still have the same end results. As I have mentioned before Vincristine can have an effect on the nerves and fine motor skills, and while it is not as common with kids Mikayla’s age, the damages that Vincristine can cause can last a life time and in some cases can’t be regained. In most cases though everything goes back to normal the further you get away from chemo. We have seen effects on Mikayla’s eyelid because of the Vincristine and her fine motor skills (for example she can’t paint her fingernails anymore, which is not important in itself it just shows you that she has less control over her fingers than she did before).

The other part that they are trying to figure out is if a higher dose makes a difference on the end results (arm 3). Some kids can handle more Methotrexate. So far for the past 10 to 15 years they have not pushed over 20mg of methotrexate because the protocol was to give them only 20mg. They just want to see what happens if they can push it up to 40mg.

And of course they are trying to see if something changes if they combine arm 2 and 3.

All of this makes you realize how much there is still to learn about childhood leukemia, that there is still no 100% cure for it yet and they still need to play around with the treatments. They have come along way in the last 15 years. But around 15 years ago they also changed the treatment schedule in long term maintenance from every 12 weeks to every 4 weeks, so we asked the doctor why they are going back to the 12 weeks. Apparently back in the day they only had the first 2 months of chemo intense therapy like they have now and moved on to long term maintenance already at that point. In the last 15 years 5 more months of intense treatments have been added to the treatment plan and the research, their analysts and their data shows that it made a lot of difference and especially the delayed intensification increased the cure rates a lot. BUT they don’t know for sure if that was all, they don’t know for sure if the 4 weeks verses the 12 weeks make a difference and they are trying to figure that out and that is what the trial is for.

They are trying to get away from the side effect that chemo has on the kids. We asked about the nerve damage and problems in fine motor skills and she said that this is why they want to decrease the amount of Vincristine. But she again told us that longterm side effect in kids Mikayla’s age are very uncommon.

She also said that steroids can cause bone decay and the bones can get very brittle if steroids are taken in over such a long period of time and that she had a teenager who just needed a full hip replacement as a result from the steroids during the chemo treatment. It is what they have to do sometimes, trading for a treatment that saves the kids’ lifes. She mentioned again, in kid’s Mikayla’s age it is uncommon and doesn’t happen so often. She said she can only remember one kid of hand and she was around 5 when she started treatment. Apparently kid’s Mikayla’s age recover a lot better and faster from chemo than older kids.

On the one hand it would be nicer to subject her to less chemo but on the other hand what if she doesn’t get enough chemo and relapses. I don’t think we would be able to forgive ourselves if we knew that we decided to go ahead with the randomization and she was chosen for the 12 weeks and as a result of that the chemo treatments weren’t enough for her.

And what if her bones get affected by the chemo and we knew there was a chance that she could have gotten less chemo and still survived without any side effects?

Let’s not forget the fact though that even if we are staying on trial, can we live with the fact that a computer will decide our child’s future? We can’t make the decision in what arm she goes into, not even the doctor, it is some computer in california who randomly selects kids to go into the different arms. We are not sure if we are comfortable with it.

I don’t think I am worried about the arm with the 40mg of Methotrexate. It affects her blood counts but they push the dosage very slowly and as soon as they see it is too much for the child they adjust it.

I guess we better get started on research!

Bakesale for Relay for Life!

We finally got a date and location for the bake sale we are doing for the Relay for Life! We will be holding it at the Clearspring Mall on Saturday. If you are looking for some freshly baked goodies for yourself and your family and want to support cancer research at the same time, come and check out our stand. The kids and I are already baking like it is going out of style! Anyone wanting to contribute to the bake sale with some of your baked items is welcome to do so. Just contact me (phone: 346-0687 or e-mail: djwolfepac@yahoo.com) We have a bunch of tables available and would love to see them all filled!

Spread the word everyone! We are all hoping to see you there!

Relay for Life!

 ”It is the greatest of all mistakes to do nothing because you can only do a little-
do what you can.” – Author Unknown -

Since Mikayla’s diagnosis I am having an almost constant feeling of helplessness. I feel like I am not in control of what happens and there is not much I can do to keep the cancer away or make some of the procedures painless. I have had to put my child’s life in the hands of people I don’t know at all, trusting that every decision they make concerning her health will be the best.  I have asked myself if this is all I would be able to do for her. Just being there doesn’t seem enough. I want to fight cancer with all my heart and do whatever it takes on my part. I want to imagine that one day there will be a cure. I imagine a day when parents come into the ER with their children and hear the dreaded news that their child has cancer but that they will also be told at the same time not to worry as there is a cure. I hope that in the future parents don’t have to hear what their child’s chances of survival are and I hope they don’t have to go through the pain that so many parents had to go through before them or are going through right now. I am hoping for a way that there can be less side effects from chemo and that the amount of chemo can be reduced. Last time I checked I didn’t have a medical degree though and I am also not a researcher which makes finding a cure pretty much impossible to me. What I can do though is helping the people who can find a cure have everything they need to do so. I can raise funds and I can support organisations that help cancer patients and their families by providing help to the families in a way they need it.

This is the reason why we have decided to create “Team Mikayla” at the Relay for Life this year! To help in any way we can to find a cure for cancer! And it makes us feel as if we no longer just sit by and watch it get ahold of family members and people we love so dearly! We help in a small way but it is a way none the less!

Team Mikayla will be walking in the night from May 25th to May 26th! We are walking at night as a symbol for cancer as cancer never sleeps! Our team consists of family members who just like us walk for a cure for cancer and in support of family members who either had cancer, are cancer survivors or are fighting cancer as we speak. All the funds raised, through pledges and other fundraising methods go to the Canadian Cancer Society, which in return will use the funds for research, support, prevention, information and advocacy.

And this is where you all come in. I am hoping that you or your friends/coworkers/family members will consider supporting this amazing cause. We can not do great things by ourselves alone but if everyone just does a small thing it will bring change.

You are welcome to pledge your support for Team Mikayla by donating any amount of money. Be it 5 dollars or less or more. Everything makes a difference. You can either do it online through the Canadian Cancer Society website (instructions at the bottom of this post), or you are welcome to contact me personally to give/mail a cheque (which needs to be payable to the Canadian Cancer Society) or cash. Donation of $15.00 or over will get a tax receipt from the Cancer Society.

The Relay for Life will also have a luminary ceremony at dusk, where candles placed in bags along the track will be lit in memory of cancer victims, cancer survivors or people who are in the middle of fighting cancer. Throughout the night, the luminaries remind us why we continue the fight. If you are interested to dedicate a glowing tribute to anyone you know you are welcome to contact me or any other of our team members. You can also purchase the luminary bags online or at the night of the event of the Relay for Life. They are $5.00 each.

Team Members:

Vika Wolfe
Dave Wolfe
Dylan Wolfe
Mikayla Wolfe
Rod Hiebert
Cindy Hiebert
Megan Hiebert
Joshua Hiebert

You can pledge for the team itself or for any of the family members by calling me at 346-0687 or 371-7347, or sending me a message at djwolfepac@yahoo.com as well as doing it on the Canadian Cancer Society website.

Instructions to donate/pledge online:
- go to http://convio.cancer.ca
- click on Relay for Life
- choose Province (Manitoba)
- choose event – Steinbach Relay for Life
- click on pledge a participant
- now you can either choose to put in “Team Mikayla” or pledge for an individual team member and click search.
- click on donate now
- Fill out your info (including e-mail for electronic tax receipt) and credit card info

or you can click on this, it should bring you directly onto our team’s site:                                               http://convio.cancer.ca/site/TR?team_id=271561&pg=team&fr_id=11274&fl=en_CA&et=Bk11yzV-GprYq4zW7bbBjA&s_tafId=200643

I also want to give a heads up that “Team Mikayla” is planning on doing a bake sale. We are still working on the particulars as to where or when, but we will let you know.

P.S. no worries, the little kids will not be walking all night, they will be with us in the evening and will be tucked into bed after the fireworks

Moving forward

We have finally gotten the green light on Tuesday to move on to Interim Maintenance 2! Her blood counts were very good on Monday and the neutrophils were in normal range. Even the cold she has doesn’t seem to be getting worse. She is enjoying very much that her hair is coming in and has shown it off to every nurse and doctor she has seen since it has been growing! I have to put her on the counter in the bathroom a couple of times a day so that she can take a look at it and she is already talking about putting her hair clips in! While we are very excited that she is finally moving forward she was not looking forward to the LP on Wednesday. When Dave explained to her that we have to go get the LP done she was very sad and cried for a bit. She was saying it hurts even with her being asleep. We think she might be maybe a little sore afterwards. You couldn’t tell though that it hurt or that she was uncomfortable after her LP and chemo as she was skipping out of the hospital and was in a pretty good mood. She only has received 2/3 of the oral methotrexate to see how her blood counts are going to react to that. Last time during interim maintenance when they started of with the full dose her blood counts took a pretty big dive and we had to wait with chemo until they recovered. We will see how she does this time around. She has also received vincristine again. This is the chemo medicine that attacks her nerves. She hasn’t had it for a while and we were worried that the jaw pain that usually came with it would be back. And sure enough she was not eating yesterday because of the pain, but we were still able to get her antibiotics into her. Hopefully it doesn’t last as long! Our next appointment is coming up Friday.

low counts

Mikayla has had crazy low blood counts for the 3rd week now. We had to reschedule this weeks chemo to next week again as we still have to wait for everything to come up. I guess delayed intensification has taken its toll on her little body! She has lost her hair again, her eyelashes too as well as her eyebrows. I can’t even tell when it exactly happened. It seems we have only noticed it at the end of last week, but they are already growing like crazy and you can’t really tell anymore. Her hair is coming back too. This should be the last time for her to lose her hair. She is pretty excited about all her hair coming back again!

She was pretty close to a blood transfusion last week. Her hemoglobin (red blood cells transporting oxygen to her organs) were at a low of 71 for around 1 1/2 weeks. Doctors usually give transfusions at 70. Normal practise would be to give her a transfusion anyway as it was just one point over but we have decided to hold off with the transfusion as all the other counts were going up by just a bit.  She is still neutropenic, but so far she didn’t get a fever. Dylan got a cold over the weekend and she has a runny nose but we are hoping she won’t get much sicker.

She is supposed to start with Interim Maintenance II as soon as her counts have recovered. Two months of that and then we should be moving on to long term maintenance. Crazy thought, it just seemed so far away when we started with treatments, but time flew by. Two more months and then we have to make the decision if we are going to stay on trial or not. I am kind of dreading it, but we slowly have to figure out what we are going to do.

While Mikayla is moving on to a different phase in her live, Dylan is too. Can’t believe that my little man is going off to Kindergarten in September. We already had a chance to check out his new school and even got a bus ride. Dylan was pretty pumped about that! He is growing up way to fast, but it makes us pretty happy to see him so excited about it!

While we are getting a break from chemo, we did not get a break from doctor’s appointments. But it is not Mikayla this time, it’s Dave. His back is acting up pretty bad again. He couldn’t really walk or sleep over the weekend because of the pain. He is still at home and doesn’t move around too much, he can’t really work or do much of anything else. He had an MRI done last week, showing that he had two bulging disks, two herniated disks, osteoarthritis and between the herniated disks the arthritis has caused spurts to grow which are also touching the nerves. The doctor said that he has the back of a 85 year old man. He referred him to a neurosurgeon, but we have to wait for their call. I just hope Dave can get in asap!

Avoiding pokes

Mikayla has been doing overall good in the last week. She is handling the chemo fine as long as she is getting enough of the anti-nausea medication. She handled the one night stay at the hospital pretty well and we were pretty much in and out. She was pretty excited to see the wagon again that she used to ride the first month she spent at the hospital and as always when she stays over night at CK5 everyone was remembering her and her steroid side effects. Even the nurse she used to give a couple of manicures a day to, came to say hello.  No manicure this time though as Mikayla doesn’t like to give them  that often anymore. She used to do them perfect and surprised everyone by how accurate she was painting the nails for her age. Now the nail polish is all over the finger as she is loosing her fine motor skills due to the chemo. It was very frustrating for her at the beginning but now she just avoids things she can’t do as perfect any more. But now to the good news! After asking several times about the chemo that she was supposed to get with a poke into her legs, we finally received the answer we were looking for! Apparently they were able to give it through the IV as long as we would visit cancer care everyday when the chemo needed to be given and Steinbach was ok with doing it that way! We were pretty pumped about that! Nothing is better than another avoided poke or in this case more! Her blood counts were all in normal range last week so we were trying to get out lots and had Mikayla’s grandparents over before her  blood counts take a dive again. Today she had her blood work done again and we were already expecting her hemoglobin to be pretty low. She seems to be having a lot of outbursts again which is a sign of her red blood cells being low.  Her neutrophils are pretty low too, almost non-existent. She is getting her chemo again tomorrow and the day after tomorrow in Steinbach. On Good Friday we are heading to Winnipeg again to get her chemo at the adult cancer care clinic as the cancer clinic in Steinbach is closed as well as the children’s clinic in Winnipeg.

Home again!!!

Today the results of the blood culture came in and they were negative, which means Mikayla has only a viral infection, just a simple cold. Mikayla has also kept a normal temperature since yesterday evening and as a result of all of that we are being released today! Her neutrophils are still pretty low and the doctor has rescheduled her chemo for March 27, pending on good blood results on March 26th. We are getting a week off!! We are very thankful that our trip to the hospital was kept short this time around and that Mikayla is feeling better already!

Back at CK5

We are back at the children’s hospital and are awaiting the results of Mikayla’s blood culture. Mikayla has developed a fever yesterday and as per protocol we had to bring her into the ER in Winnipeg to be admitted right away. I think the results of the blood culture should be available sometime tomorrow. The doctors are trying to see if she has a bacterial infection or just a viral one. It will depend on those results if we will be sent home tomorrow or if we have to stay longer. She was not feeling well for a while already and her temperature began to be all over the place. She is congested and has a hoarse voice. She is also complaining about a bunch of other things and is very irritated at times. But she has also moments where she is totally fine. We think it is just a cold but the doctors need to make sure that it is nothing that needs to be treated right away. The good news is that the doctors have not come in yet to let us know that bacteria was found so we are hoping for the best. Her urine sample was also negative. After receiving Tylenol yesterday her temperature is 37.2 degrees celsius and up. The last time they took it, it was going up again. She is already on two types of antibiotics that fight the most common types of bacteria. She also has trouble with her central line. They can get fluids in no problem but couldn’t get one drop of blood out of her yesterday, therefore they had to poke her in the arm. She impressed all of us by sitting still and letting the nurse take the blood and thanks to the nurse it was done with just one try. The doctor and the nurse made sure that they put freezing cream on a couple of places for the needles to go in so it wouldn’t be so bad. They felt pretty terrible that they had to poke her even with the central line in place. Mikayla obviously didn’t like the poke and didn’t let us take off the other EMLA patch with the freezing cream for the area that wasn’t used. She was terrified that, that would mean another poke but we could finally convince her that there was nothing else planned for the rest of the day. The nurses were going to put some medicine into her line to break apart any clots that might have formed hindering the blood to come out, but when they tried again after she was poked the blood was running no problem. This morning it seemed blocked again so we waited a little and once again it worked no problem. I hope this is not going to happen on a regular basis now.

Half way through Delayed Intensification

A couple of tantrums, broken dishes, lots of hotdogs, chips and milk soup later and we can gladly say that we have survived the steroids during delayed intensification. We wish we could say that we will never see them again, but we think they are going to make a couple of short returns during long-term maintenance. The important part is that we do not see them again for months in a row!!!! This last week has been tough on her and it will be still tiring for the coming days until all of the side effects of the steroids subside. Everyone noticed her feeling bad today thinking her red blood cells are too low and they also re-checked her temperature. She didn’t want to play and was lying cuddled up in her blanket in my arms for most of the time. She only threw a couple of tantrums that could be mostly fixed within a couple of minutes. After the last tantrum accident she perked up a bit just to get home and lie in our bed. Her cheeks and her tummy are all puffed up from the steroids. She is still very uncomfortable and complaining about her tummy and back. We are hoping this will all go away before she moves on to part 2 of delayed intensification. We are scheduled next week Tuesday to start with the different chemo schedule depending on her blood counts. As I have mentioned in my previous posts they are supposed to take a dive this week. They are not really high right now so it will not take much. If they are too low by Tuesday we will get a longer break. There is a 25% chance that we will move on as scheduled, a 50% chance that we have to wait for another week and a 25% chance that we have to wait for even longer. The doctor also mentioned today again that even for kids that have not had many admission throughout the treatment so far, this time is the hardest and they end up being admitted for one reason or the other. We will see how our little fighter does! Praying and hoping to get through the next couple of weeks without unexpected admissions! Not sure how hard the second part of delayed intensification will be on Mikayla. If she is going ahead with chemo Tuesday we will be admitted to CK5 (children’s hospital) for one night as the chemo medication (cyclophosphamide) she is supposed to get needs Mikayla to be hooked up to an IV for 18 hours. On the same day the daily injections of cytarabine into her legs start. She will have to get them for 4 days, then she will get a 4 day break from it and will receive them again for the following 4 days. This time around there is no way around it and it can’t be given through the IV. The doctor compared it with insulin shots. We have a hard time thinking about her getting any kind of poke and we hope she is going to get through it without being terrified of the clinic again.  We will probably be able to get the injections for the most part here in Steinbach so we do not have to travel back and forth to Winnipeg every day. She will also be receiving a daily chemo medication in pill form starting the same day as the IV for 14 days. Her next LP is also scheduled during the hospital stay. After this we will be heading into interim maintenance II.

Turning 3!

Our little baby turned 3 yesterday, and while we usually have a big family birthday party, this year needed to be a little quieter because she isn’t feeling so well and because of the chance of infection and we decided to not throw one this year. There was still a cake and presents and of course balloons. Her uncle stopped by for a little bit too. She was pretty excited about her birthday and the requested puppy cake prior to yesterday, but with the chemo on Tuesday and being on steroids she is very exhausted right now. She got worse throughout the days and by yesterday she was sleeping for the most of the day or just laying on the couch. Grumpy and not in the mood for anything but food and lots and lots of cuddling and back rubs. She was also very pale. There is always a chance for the need of a blood transfusion so we had to bring her into the Steinbach Cancer Care for blood work to make sure her blood counts were not disappearing. Thanks to the lovely ladies in Steinbach we got the results pretty fast. Her hemoglobin and platelets who would be the ones needing transfusions were low but still in a normal range for her. But her neutrophils are already completely gone and there are also only a few white blood cells left. She is on steroids right now and usually her blood counts are a little higher while she takes them. The steroids boost her system. Next week all of her blood counts are supposed to take a huge dive and the doctor said that some blood transfusion might be needed. We are just glad that we didn’t have to make a trip to Winnipeg on her birthday and we are happy that we could get at least a couple of smiles out of her last night.