Noah is officially a "reactor"

Rats. Noah had an anaphylactic reaction to one of his chemo drugs this afternoon - his face and lips got all red and swollen and his throat was itchy, hot and it was hard to breathe- so he was admitted to the hospital for observation tonight. The doctor and nurses were able to stop the reaction with epinephrine and benedryl and hydrocortisone, but they wanted to make sure it wouldn't happen again once they wore off. It hasn't, so that is good.
He had just come out of his LP, so he was still quite groggy from the anesthesia when it happened. It was very scary for him, but what seems worse now is that this was the preferred method of administration; the alternative to the one IV dose is 6 injections over 2 weeks. This may significantly affect our time at home. He is also understandably not happy with the idea of injections as opposed to IV doses.
The Dr. (Dr. Lucy, whom I love....) is the one who called him a "reactor". He has had allergic reactions to his antibiotics, Tegaderm (a dressing they use over his VAD when he is accessed), platelets and now this med, PEG l'Asparaginase. He may be low maintenance personality-wise, but antibody-wise...not so much. His big, thick file even has a big red CAUTION on the top of it, lol!
It is too bad he was kind of out of it when she called him a reactor, because he would have appreciated our conversation:
Dr. Lucy: Boy you're a reactor.... a nuclear reactor!
Me: As long as you don't have a complete meltdown!
I know it isn't really that funny, but he totally would have laughed....
sigh....

Back at Ronald Mc Donald House!

Yep. We're back. We probably shouldn't be, but we are. Noah seems to be coughing quite a bit all of a sudden. When Tom and the girls left here on Monday morning, Noah went right back to bed and slept for an hour and a half until the guy in the adjoining room started singing (rapping?) along to some song with very objectionable language and I thought, "We have to get out of here!" So we went to the hospital yesterday and the Dr. approved Noah's return to RMH but he woke up coughing more this morning and so he basically had to spend most of the day in our room, so as not to make anyone else sick (actually more to assuage my guilty feelings, lol) . He doesn't cough that much, just more than the director would like. I feel terrible every time I hear him, but the dr. did say we could come back.... (can you tell I feel guilty? ) They did a couple of tests on him and he was negative for bacteria and also for H1N1, Influenza A and a few of the more serious common viruses. Maybe I should give him some cough medicine or something but I'll have to find some that doesn't have Tylenol in it because now that his fever is down, I can't give it to him anymore.

I suppose I should back up and tell you how our Easter Weekend went: too fast and not enough time together. Noah was very sick- he had a high fever all weekend (up to 40.3 at one point) which the oncologist attributed to ARA-C, the chemo drug he was given over the weekend. He spent the better part of Friday and Saturday in the hospital and Sunday morning, too. Tom spent all that time with Noah at the Hospital and I did a few fun things with the girls. We went to Vancouver First CRC on Sunday where we enjoyed a simply beautiful service with an amazing choir, cellists and trumpets all singing Hallelujah! over and over! It was so good to be there pondering the empty tomb and a future with no more crying or sickness or disease or death ... I cried for most of the service. Bawled my head off.
After church we received permission for Noah to be at RMH for Easter dinner, so we came back here for the afternoon. It was so nice for us to be back here together.
Easter dinner was prepared for us by a family whose 7 yr old daughter won a pageant and chose RMH as one of the charities she will support during the time she holds her title. It was a bit weird. She is very cute and very nice, but she arrived dressed up in a big tiara and a sash and with a lot of makeup on. Her sister told us that every appearance she makes at places like RMH and when she does things like this during this year, she gains points toward a scholarship. Alyson and Miranda were quite taken with her tiara and they asked me later, "Is she a real princess?" They were so confused by the answer that "no, she isn't a princess, she won a beauty pageant" ... "a kid won a beauty contest????" and "Is that why they were taking so many pictures of us?" The whole thing was a bit weird, as I said. However, the girl was very nice and our girls really liked her a lot, and most importantly, the dinner was quite delicious!
The best part of the evening was when Greg and Lisa de Vries showed up! They arrived just in time to join us for dinner. We haven't seen them much since they left Smithers, but it was such an awesome visit. We talked and laughed for hours! I didn't realize how much I missed them....
A strange thing happened when Noah and I were at Safeway the other day; I was trying to find something, anything he would eat when who should walk around the corner but Janna Van Driel! The whole van Driel family was there! At our Safeway! It was so cool to see them, too. A very nice surprise....

Getting back to today, when Noah woke up, his temperature was only 38.2, so I didn't give him anything and by the afternoon he was down to 37.6. Yay! However, he has been feeling very nauseous and has vomited a few times in the last couple of days which feels terrible, of course. I feel really bad for him; thankfully he doesn't have to have ARA-C again until we come back ion the middle of May. That fever really took a toll on him, too; he had two naps yesterday for over 3.5 hours in total, he slept in today, and fell asleep early tonight. I hope that all this sleeping helps him get over this cough... please pray that he will stop coughing soon (so we can stay here without feeling guilty, lol...), and so we can enjoy the next few days with my mom who is coming tomorrow! We are very excited about that; in fact, that was the first thing (and one of the only things) Noah smiled about today. It will be nice to show her RMH and the hospital and the places we have been enjoying here in Vancouver.
On Thursday the premier is coming here to meet the people in the house and make an announcement about a new RMH they are building on the hospital grounds. So we may be on TV on Thursday night! Watch for us....

Sorry it has been so long since the last post, but it has been quite a week! It has also been difficult to do anything with the blog or Facebook because with Noah being sick, we can't stay at RMH and so we have been at Easter Seals, while nice enough, doesn't have internet. ( I know... crazy, eh?)

Noah has not had a very good week. He lost two kilos from Friday to Thursday, he has been coughing all week and has had a headache since Wednesday. The doctors are not sure what that is all about, and nothing they have given him has helped. Not even Morphine. (He doesn't like it anyway; he says it makes his head feel weird.) The Chemo has started to make him feel ill as well - he threw up yesterday. : ( Poor guy... The other thing that is happening is that he has had a fever since yesterday morning and it has not gone away either. We had some plans to do something outside since it was a beautiful day and instead, spent most of yesterday and today at the hospital.
They did consider admitting him today, because he is coughing and the fever spikes as soon as the Tylenol wears off. They decided, in the end, to give him a blood transfusion since he was very low and some antibiotics just in case, and then, just before we went on our way, more tylenol, to bring the fever down. They thought that since he needs to go back to the hospital tomorrow morning for treatment anyway, he would be ok to go as long as we monitor his temperature and give him tylenol when necessary.
It has been crazy because Tom, his mom, and the girls arrived on Thursday, and there isn't enough room at Easter Seals for all of us, so some of us are staying at RMH and some of us are at Easter Seals. Tom has been at Easter Seals with Noah and one of the girls and I am at RMH with the other two. And there wasn't enough room at either place for Tom's poor mom. so she was in yet another place! Like I said, crazy. We have been trying to enjoy some time together but it is so hard when Noah is so sick. We did have a nice supper tonight with my Uncle Ken and cousins Sam and Reuben; it is so nice to see them so often!
The girls and I will go to church tomorrow, but it sure won't feel right without Tom and Noah with us.
Thank you all for your encouragement and prayers, please continue to pray for us - it is difficult to be apart from each other, and even though we were able to spend the weekend together, we aren't really together. Sigh... It will be another two weeks before Noah can go home again, and again it will only be for a week or so.
Please pray specifically for Noah's fever and coughing to subside, and for him to feel well enough to be outside tomorrow, to enjoy the beautiful weather we are having here as a family (before they have to leave again).
May you have a wonderful Easter! He is risen, Hallelujah!

hang around day...

So, yeah, we have been here since 8:00 AM and he is only getting his chemo now. And yes, it is 4:30. When we arrived, there was an issue with his VAD; the nurse couldn't get any blood out of it, so they had to send Noah for a chest x-ray to make sure it was still in the right place (it is) and so they decided there was probably a little clot at the end, so the nurse put in a very powerful anti-coagulant to get rid of it. He finally had bloodwork done at about 10:20, then he went for his Lumbar puncture at 11. It was funny, the Willistons gave Noah the Planet Earth DVDs (he was very excited and has wanted to watch them all the time since we got them) and he chose one to watch during the LP and all the people in the room were so excited! Both nurses and Doctor Lucy said, "we get to watch Planet Earth?!!" Every time we met a new person, he or she would tell them what was going to be playing and they would have the same reaction. It was hilarious! And then, he was sedated, so he doesn't even remember any of it, lol! He was totally groggy until after 1, poor guy....
The Chemo he just got is one that can damage his bladder, so he had to be sufficiently hydrated to take it. The problem was that on procedure days, he has to have no food or drink for 6hrs, so he had had nothing to eat or drink since before bed last night, which meant he was dehydrated to begin with. It took a long time to get him to where he was hydrated enough to have the chemo. Thankfully Uncle Charles came to play this afternoon for a while. We had a nice chat for a while, and then it was time for a rousing game of Yahtzee. Noah was in a very good mood, so it was full of silliness! The nurses also have to monitor him for 4 hours after giving him the chemo so we will be here at the hopsital until around 9 tonight.
One more thing, Noah has started coughing, but doesn't have a fever, which means we cannot stay at RMH and he will not be admitted because he isn't that sick, so we have to move to Easter Seals at 9:00 tonight. Not sure how we are going to do that yet, but hopefully it can be done quickly and easily. (Taxi?) We can come back to RMH as soon as he is deemed safe to be around the other kids.
On that note, there is a boy from Smithers at RMH this month! The Wacholz (I am not sure if I spelled it right...) family is here with their son, who is 11. That was fun.
**edit**
It is now 9:00 and we are still at the hospital; Noah still has at least a half hour more to hydrate. I went back to RMH and brought all of our stuff to Easter Seals so now we can just take a taxi to Easter Seals and drop into bed. I am exhausted. Strange, when all I did was sit around all day! Noah almost has a fever - he is pretty consistently at 37.7 or 37.8. If he was 38 degrees, he would be admitted. I was selfishly praying for that all afternoon - I didn't/don't want to deal with all the hassle of moving and all the cleaning that entails!
Tomorrow Noah has to be here for chemo at 11,and we can't really be in public at EasterSeals either, so tomorrow will be a good day to do some school work. I forgot to bring his schoolwork today (*hangs head* sorry Tom...) so we will try to make up for that tomorrow.
Well, I have to go and give Noah the first dose of the chemo drug he will be taking almost every day for the next three years. Poor guy, he is so tired and isn't feeling too great either - I thought this phase has the drugs that will make him sick and it looks like I was right.
It begins.

Heading back to Vancouver...

Noah went for blood work today and was given the green light to begin treatment on Friday. He needed to have enough white blood cells and specifically a certain kind of white blood cells called neutrophils, the cells that fight infection. I guess they need his blood counts to reach a certain threshold before they go about killing them all with chemo again, so he isn't left with none and open to any infection.
It is really quite amazing what they have figured out, in terms of treatment; we are amazed every time we learn something new to us- we think,"wow, how did they figure that out???" Even the fact that 40 years ago, no one survived Leukemia; there was no treatment at all, but now 90% of kids with A.L.L. are CURED. Cool eh?
Again, I have mixed feelings about all of this: it will be difficult to leave Tom and the girls tomorrow morning, but I am kind of anxious to get this part of our lives going so it will be over faster. (I still can't wrap my mind around 3 years yet....) I think this phase will be the most difficult in terms of time away from our family. This phase is 57 days long with a week break in the middle (which should be sometime in the 2nd week of May) and then 29 more days until it is finished around June 4.
Thank you to all of you who came by, stopped me for a hug at school, church, in the store, at the post office, and who dropped off cards and gifts, etc. We appreciate every one of your thoughts and prayers. We are feeling so thankful for you all, for being so blessed and supported by our community, so thank you very much! Terrace CRC Sunday School even sent a card and a gift! (Thanks, Maria!)
Well, I am not quite finished packing, so I should get going... I will post again on Friday night. ttfn,
Stacey

Good News/Bad News Day

Noah was supposed to go back to Vancouver on Sunday to begin treatment on Monday, but he went for blood work this morning and his blood counts are too low for treatment, so we get to/have to stay home until they are up! His white blood cells need to be at a certain level and he needs more neutrophils ( the specific kind of white blood cell that fights infection) before he can go. He is very happy about it - me, I'm not sure how I feel about it.... I kinda just want to get this over with, and any delays just drag it all out. Our nurse, Karen, told me that this kind of thing happens more often, so I guess we need to be prepared for it every time. This was one of the doctor's concerns: that although Noah's blast cells in his bone marrow did go down below 5%, his blood counts were slow to come up, and that is why he has 10 months of intensive treatments instead of 8 months, which is more usual.
The new plan is to have blood work done on Wednesday and Karen is confident that Noah will be ready to begin treatment on Friday. So we are probably going on Thursday. It will be nice to have more time at home with my girls and Tom. It is just hard to change my plan in my head, you know? I was so set on going on Sunday, I am finding it hard to be happy about staying. Weird. Probably what will happen is that in a few months or years we will look back and say, "See, it's a good thing we didn't start that first week when we were supposed to - it has worked out so much better this way!" I am just going to take it one day at a time...again. : )




p.s. Noah asked me to make it "font-y" : ) silly boy...

Home Sweet Home....

We are home for a week! On Friday we received the news that Noah's blast cells were indeed below 5% - Praise God! We went to the clinic for his final bone marrow biopsy and for a lumbar puncture, thinking he would also have chemo, but he didn't; instead, he had a blood transfusion. He had been very tired, unable to hurry, or walk up the stairs, so they decided that he needed a "top up", as my Aunty Helene put it. : ) So as of Friday at about 4:30 we were free to go home! We were able to drive all together, and arrived home on Saturday night.
It is so good to sleep in my own bed- I forgot how much I love it, lol. Noah has really perked up as well; he is very happy to go to school for a few minutes each day before the bell rings to see his friends. They were very surprised to see him with a puffy face, but most of them have gotten used to it by now and have realized he is still Noah inside....

While we were at the clinic we met with Dr. Davis, (Noah's oncologist) and he gave us our map of the next three years. (!) As much as I wanted to know what April looks like, finding out what the next three years look like was pretty overwhelming! For instance, the next phase is called Consolidation, and it is 50 days long, which means we need to be in Vancouver until May 30. There is a break between days 22 and 29, which is May 2-8, so we may be able to come home for that week. Then at the end of the 50 days, he can come home until his white blood cell counts are up and if they are up again, he needs to go back on day 57 for the next phase (Interim Maintenance) . That one looks like we need to go to Vancouver every two weeks for 2-3 days for another 56 days. I haven't figured out what days, etc for this phase, but I do know it is June and July. On day 64 if his counts are up, we begin Delayed Intensification where it looks like we need to be in Vancouver for day 1, 4-6, 8, 15, 29-32, 36-39, 43 and 50. I am not sure about one of the chemo drugs, how it is administered, etc, so we may be there more often than that. That should take us into October. Then we begin Interim Maintenance II where we need to be there every 10 days for 2 days over 57 days. In December it is Delayed Intensification II which is 57 days where the first week and the third week are in Vancouver, then days 29-32 and 36-39 and 43 and 50 as well. On Day 57 (in February) we begin Maintenance. This will last for the remainder of the treatment, until June 2014. This entails going to Vancouver once a month or so until he is finished. Of course all of this is count-dependent; if at the beginning of any phase of treatment his counts are too low, we need to wait until they are up before treatment can begin. This is also barring any illnesses or anything that might come up to push the dates back.

See what I mean????
Doesn't that feel overwhelming? I guess it was the answer to my next question that really got me -I asked what that means for school, and was told that he likely won't be able to go to school again until February. If he is at home for a length of time and no one is sick at school (when does that happen?) he can go, but I am thinking there is no point in that unless we can really keep up with what his class will be doing so he can participate. We'll have to see. He and I are going to check out the school at the hospital where the teacher there has already been in contact with his teacher and where he can work from 9-12 every weekday. I think we'll have to make it a habit to go to school every day. Of course I have no idea if he will be up to it yet, but it is good to have a bit of structure to your day/ week.
Anyway, I received some good advice to stop looking at the entire map and only look at each phase (or even each day) and get through that one THEN look at the next one. I am trying to do that, and also to look at how much we will actually be home, not how much we will be away. I am reminded of Jesus' words, "Who of you by worrying can add a single hour to his life? ... Do not worry about tomorrow, for tomorrow will take care of itself. Each day has enough trouble of it's own." There is no point in being anxious about any of this, and it is actually counter-productive!
Please pray that the peace we have been feeling would continue.
There is also something fun to look forward to this summer: CampGoodTimes. It is a camp for kids with cancer and their siblings and also they have a family camp. So far it seems that there is a break in the treatment right at the time we can go to family camp! We LOVE camp and had to make the difficult decision not to go to Rough Acres this summer- I guess that is because God knew we were going to this camp, not Rough Acres! Emily is very excited about the possibility of getting a t-shirt. (?) Funny girl. It is all free and I've heard they may even pay for us to get down there! Crazy.
Noah is feeling ok and has been doing some fun things like hanging out with friends, going to a woodshop to build his Cadet Derby car and he is looking forward to Friday night's races. We have been doing a bit of his homework everyday, trying to get into the habit.
The other thing we are looking forward to is Miranda's birthday party. Her birthday was on April 3 and so on Saturday afternoon, we plan to head to the pool and swim with her friends. Should be a lot of fun!
Another thing that has been going on here is that a few of our friends have put together a Relay For Life team called "Noah's Ark of Hope" The Relay is to raise money for the Canadian Cancer Society. Isn't that just so cool?
From their website: "Canadian Cancer Society Relay For Life gives you and your community the opportunity to celebrate cancer survivors, remember and honour loved ones lost to cancer and fight back against all cancers." If you want to check it out, or donate to the team, please visit this site Relay For Life 2011 Smithers - Team Statistics Noah can't believe all these people are supporting him.... he just shakes his head, speechless.
My apologies for not writing this week, I have been doing some pretty major spring cleaning this week, and it has been busy! Thank you for reading and following our journey and please leave us a message - we love to read your notes of encouragement!