Wednesday, June 27, 2018

Fourth Boost

I have been really putting off writing this post. It has been a hard one to sit down and write as it seems we are yet again coming to a crossroads. Sebastian had a fourth donor boost on June 14th as his chimerism results showed his B-Cells are still dropping. They now sit at 55% donor which means his own cells are at almost half. Sebastian's counts are: Myeloid cells - 84%, stable from the last chimerism, T-cells - 93%, down from 97%, and B-cells 55%, down from 61%. When I heard the news it felt quite devastating. I think Nate and I thought the third boost would do the trick and we could wash our hands of this. I had all sorts of thoughts going through my head, the most worrisome, that his bone marrow transplant is failing.

We quickly scheduled a family meeting with our Oncologist to go over results and decide on a plan. Our team reassured us that Bash's transplant is not currently failing. His other blood counts are staying strong and if his cancer were present his white blood cell count would be elevated and his platelets would be low. Both those counts are normal and no cancer cells have been seen. Our team also said that some transplant patients live with a mixed chimerism and that this could be his normal. They did not want to waste any time though as we have enough donor cells available to boost him. He was scheduled two days later on June 14th for his fourth donor boost which was a strait DLI (Donor Lymphocyte Infusion) and 10x the amount of his third boost in hopes again of causing some graft vs host disease which in turn would give us the desired graft vs tumor effect.

Our team did go over what our options will be if this fourth boost doesn't increase his donor cells. We have enough cells still to do at least two more boosts, which we will definitely do if needed. Bash is almost at a year post transplant which is amazing, and a good sign that he has done well so far. The benchmark we want to hit is the two year post transplant though as studies show after two years the chance of relapse is much less - the farther from transplant you get the better the odds. After this next boost we will do his chimerism test (scheduled for July 10th) and his results should be back in one weeks time as they will put a rush on them. If his counts are still dropping Bash will be scheduled for a bone marrow aspirate to check for cancer cells and to get a better chimerism result from the source. Depending on those results we will then be looking at either a second bone marrow transplant from a different/new donor, or we wait and see if his cancer returns, and if so he would need to be treated with chemotherapy again to get his cancer into remission and then a second bone marrow transplant with a different/new donor. Both are extremely risky and neither are options we want to even think about let alone choose.

We found out almost one year ago today that his cancer was in remission. It was such a blessing and the best timing going into everything we faced. It seems crazy to me that it has almost been one year since his bone marrow transplant too. Lots of pictures and videos have been popping up and flooding my facebook and snapchat memories. Seeing videos of him a year ago is mind blowing. He has come so far and is so different, he has so much hair now! His resilience still amazes me. I am still blown away by how strong he is and what a loving, compassionate and gentle little boy he is. He is definitely an old soul and has taught us so many things in his two years.

And I can't believe it's almost the end of June! Sebastian celebrated his second birthday June 4th! A huge milestone for all of us! We did a Vikings and dragon theme, and Icing Smiles Canada and Krista at Simply Sweet YYC are to thank for our amazing dragon cake! We had numerous family and friends come out to celebrate and we could not have asked for a more perfect day! We have spent so much time outdoors enjoying the beautiful weather. Sebastian loves to be outside, wants to go to the park all day and discovered the water park recently as well. We are looking forward to the July long weekend with family in Saskatchewan for Nate's family reunion and some much needed vacation time.

As always, thank you for your continued love, prayers, and well wishes, we would not be where we are today without you all! And the quote that speaks to me the most in this moment, "Always pray to have eyes that see the best, a heart that forgives the worst, a mind that forgets the bad, and a soul that never loses faith."<3 p="">

Monday, May 7, 2018

Third Time's the Charm

Some good news and some bad, I'll start with the good. Our donor, bless you where ever you are, agreed to donate again! We found out shortly after my last post. He went in to donate his blood today, then his blood travels to us from wherever he may be - we suspect Europe somewhere, and it will be ready for Sebastian on Wednesday May 9th. We are being admitted Tuesday night, then get a pass, same as the last two boosts. This time will be slightly different as this blood will be a 'live' donation as it will not be frozen first. There is higher risk for graft vs host disease with a live donation and Bash will be given approx 10,000 cells like in his first boost. The donation should be higher concentrations of B-cells and stem cells, which we all hope kick start those cells into gear.

The bad news is we got chimerism results back and those pesky B-cells are still dropping. They currently sit at 61%, previously 69%. His T-cells are at 97% which is good as they have been staying steady, previously 98%, and his doctor said it would be more worrisome if those were dropping too. His Myeloid cells are now at 84%, down from 86%. We are really hoping third times the charm on this one as it's really felt like we have all been dragged through the mud for the past few months. Don't get me wrong, things could be way worse. Sebastian is healthy, and he is cancer free! I just feel like I live life on the edge, as every bump or bruise, every fever, every cough, every day that he might be fussier than normal, it terrifies me. That the what if's are always there staring you blankly in the face and it can be really hard to stay positive about this whole crumby cancer situation. I just want him to be ok, I don't want to worry anymore if his cells are up or down, purple or blue, I just want him to be better, to grow up, and to not have to keep visiting the oncology clinic every week. I so badly want to be past this part and looking forward.

He's seriously such a champ, does his weekly blood work now with less and less tears. He is a very active and charming little boy. He is growing more and more independent everyday. Yesterday I was out front with him and he started walking, guess we are going for a walk I thought. He walked all the way to the park - about a 7 min walk from our house. He knew how to get there all by himself, practically dragged me there haha, and was so proud when he found it! If he ever figures out the front door and I can't find him, I know where I'll look first!

Please keep us all in your thoughts and prayers this Wednesday and in the weeks that follow, I feel like we need some extra positive vibes in our lives. As always, thanks for all the love.

Monday, April 9, 2018

We Could All Use A Boost

Sebastian's first boost happened on February 21st. He was admitted the night before and given a pass so we could sleep at home. We were back at 9am the next morning and the nurses started two IV's on him. One for the donor boost and one as a reaction line in case he had a reaction to the donor blood. We opted for one in his hand and one is his foot so that he could still use one hand to play and eat. Child life came in and did some amazing distracting while the nurses started the IV's and then found him an awesome 'car' wagon which we couldn't get him out of! Once the IV's were in he was started on fluids to help hydrate him and flush his system. He was given a few medications in preparation for the boost, and then we waited.

The donor blood came up from the lab frozen and had to be carefully thawed in order to try and preserve what we didn't need for another boost. Once thawed the amount given was so small! He was given less than 10ml and it was pushed in from a syringe in under a minute. He received the boost just after 1pm and he slept through the whole thing. We were told he was given 10,000 cells per kg. He was given more fluids after in order to flush the cryopreservatives that are present in the donor blood, as they are extremely hard on the kidneys. We stayed until just after 6pm and were sent home.

We had to wait three weeks after to do the blood test called a chimerism which tests the percent of donor blood present in Bash's body. He had weekly clinic visits with regular blood work to check for graft vs host disease. After the third week, we waited another week and a half for chimerism results. They were not quite what we had hoped for. His B-cells dropped more. He started at 74% before the boost and they were now 67%. Our oncologist decided another boost was our best choice and Bash was scheduled for his second boost for April 3rd.

We had lots of fun in between boosts, we took Bash sledding, had family visits, got his hair cut for the first time, enjoyed an Easter away in Banff - our first official holiday away as a family since diagnosis. And much more. We also welcomed our adorable new niece Nova Lynne to the family!

April 3rd went the same as the first boost. We were admitted the night before and given a pass to sleep at home, then return in the morning. This boost was significantly more cells as it turned out the viability was only 8%. Our oncologist did not have high hopes that this boost would do much, but wanted to take the chance as it is better than doing nothing. The amount Bash received this time was 1,000,000 cells per kg. and it was hung in a bag this time - approx 200ml and given to him over two hours instead of under a minute. He then had his fluid flush and the cryopreservatives were much more noticeable as Bash had a distinct 'corn' smell. We didn't leave the hospital until 9pm. We were given the option to stay overnight which we (happily) declined and looked forward to climbing into our own beds after a long day.

Sebastian has his first clinic visit tomorrow post second boost, and will still be seen weekly. At three weeks we will repeat the chimerism test. Our oncology team has already started the paperwork to contact our donor as they would like to give Bash a third boost of fresh donor cells in hopes we can get those B-cells climbing again. If the donor is willing to donate then we will hopefully be looking at another boost in approx 2-3 more weeks. We will not wait for the chimerism result but will still be hopeful that it has helped.

The waiting is hard, and the not knowing is even harder. I heard a quote recently that really spoke to me, "Sometimes when you are in a dark place you think you've been buried, but actually you have been planted."

Bash has been energetic, happy, and is loving life - except for those terrible two's that seem to be creeping in here and there to keep us on our toes!

I want to take a moment to acknowledge the devastating tragedy that happened over the weekend with the Humboldt Bronco's. It hit close to home, not just because we are from Saskatchewan but we had family on that bus. Thankfully he is going to make it, my heart is heavy knowing so many didn't. We are thinking of you, your team mates and your family Bryce. We are sending all our love and prayers to you and to everyone involved. #HumboldtBroncosStrong #TeamBash

Sunday, February 11, 2018

A New 'Normal"

Life has been busy. It has been almost 3 months since I posted. I guess no news is good news. So much has happened in these past three months. Christmas, Bash's one year anniversary of diagnosis, New Years, and more.

Lets start back in November. Sebastian had his broviac line removed! It was a fairly quick procedure, although we ended up waiting an extra hour or so in day surgery. It seriously wouldn't be normal for us if there weren't some sort of delay. Having the line out has been so awesome. Normal baths where we don't have to saran wrap him, no more weekly dressing changes on the line, no more line flushing or locking or worry that it would block, or that Bash would pull the line out. It has been a breath of fresh air to say the least. The only downside to not having the line is that our monthly check ups involve us going to the lab first for an arm poke to get blood-work. Sebastian has figured out very quickly what being in the lab means and his cry breaks my heart. He has figured out when I put on the 'freezy cream' (Ametop) on his arms to help numb his skin for the pokes, what is about to happen. He also started fighting the doctor and nurse exams - he knows whats up and wants no part of it, our cooperative little boy is now an independent toddler who wants his say and stands his ground very firmly.

December was then upon us in a flash. For Christmas we had plans for Nathan's family to visit. That all got thrown out the window when the flu took over. Flights were changed and/or cancelled, and visits were delayed. On top of that the weather turned very cold and all of the outdoor plans we had in mind to do had to be dropped as well. When family finally did arrive it was only for a few days and we stayed inside and kept warm. Even though our visit was short it was so lovely to have family here and to not have to travel anywhere - usually we are driving all over Saskatchewan to visit with family and friends. What a nice treat to stay put and have people come to us!

New Years Eve was a very emotional day for all of us. One year since Bash was diagnosed. As much as I wanted to forget this last year, the memories flooded in. Cancer robbed us many things this year. I was angry for a long time, am still angry, but it also taught me to be grateful, to cherish every moment, to love with all your being, to not sweat the small stuff, that family is everything. It showed us how strong we are, how much love surrounds us, what the important things in life are, and it taught me how to be humble. There were definitely a lot of tears, many cuddles and feelings of how unfair it has all been. Then there were memories of all the good things, the first crawl, first words, the first steps, Bash's ability to light up a room and send his visitors away with smiles, first birthdays, laughter - so much laughter. Through everything he has had to go through in this year he still managed to make those milestones, and show those around him what a fighter he is. To look at him is to love him, you would never know he was sick. For anyone who didn't see it, here is a link to the video I made for Bash's 1 year anniversary: https://youtu.be/YlHkgR4R1aA

January 7th was officially 6 months post transplant and Sebastian was finally allowed to be in public! Being able to take him to the supermarket or the mall was super weird at first and we have still been very cautious of germs and limiting his exposure to sick people as much as possible. He has been in a whole new world and is in awe of every new place we take him! His personality is really starting to shine. He loves being outside and has been very 'chatty' in the past few weeks. Won't be long before he's talking our ears off! He can finally have play dates and is still getting used to other little kids, he's not sure what to do with them haha! I also started back to work on the second week of January, and Sebastian started going to his new Day-home. There are a couple other kids his age and it is only a few minutes drive away from us which has been really convenient. He seems to have transitioned well with a few half days to ease him into it. Although he cries and clings so hard to me when I drop him off, he settles in quickly and has a lot of fun there. He has even come home with some crafts!

Being back to work has been strange but good. It was time we got back into a routine and made an attempt at being 'normal'. Although I miss being home with him a lot, he needs the socialization with kids his age and interactions with other people who aren't doctors and nurses. And I needed to get out of the house and be around adults, and have my sense of self back. I'm very lucky that my shifts are Monday to Friday and vary each week so that some days I'm off at 3pm and can still hang with Bash for a few hours before he goes to bed, and that my evening shifts start at 230pm so I get some mornings with him too. The hardest part has really only been trying to work his monthly appointments around our work schedules.

And on that note, Sebastian's has had a few extra appointments in the last month as his last blood work showed some questionable results. He had an extra bone marrow biopsy and lumbar puncture to make sure there is no cancer on Jan 12th, and so far everything is cancer free. His donor B-cells have been slowly and steadily dropping off though and are currently sitting at 74%. Normally when donor cells drop it starts with the T-cells and so far Bash has 100% T-cells. Because there is a drop in his B-cells and that is where his cancer started, his doctors are concerned that with his own cells trying to come back that the cancer could return. We had a meeting last Wednesday (Feb 7th) to talk about our options and it was decided to give Bash a boost of donor cells. We have enough blood from his bone marrow donor stored that we can give him two boosts if needed and still have enough remaining if we ever need it for a transplant - touch wood we never do. We had more blood work done that day too so we can see if the B-cells start to come up on their own. We are crossing all our fingers and our toes that those cells start to rise. Even if the cells increase it will probably not be enough and the doctors want to give him the boost no matter what. It will be sort of like a mini transplant. He will receive the donor blood just like a blood transfusion as he did with the transplant but at a 1/4 of the dose and with no chemotherapy or immune suppressants. This will give the donor blood full strength and Bash will be at a high risk for Graft vs. Host Disease again. If he shows any signs of GVHD we will treat it as it comes. A little bit would be a good thing as it would mean the graft is strong and the cells are doing what they need to.


We are very worried and have been on edge from these results. Hoping this boost is just the thing he needs and that it is as uneventful as possible. He will likely be admitted this Wed or Thurs (Feb 14th or 15th) or Feb 21st at the latest. It will be a day procedure as long as everything goes smoothly. Please send all your positive thoughts and prayers our way! Might take a month or two before we find out any results from the boost. We will keep everyone posted with anything we hear. Thanks for your continued support.

Love Terra, Nate and Bash.

Monday, November 13, 2017

100 Days and Onward

Today is day 129 - Nov 13, 2017.  On day 100 - Oct 15th, we stopped giving Sebastian many of his medications which felt really strange at first. All he takes now is acyclovir 2x daily, Septra on weekends only, and an enoxaparin shot 1x daily. We learned on October 18th that Sebastian is cancer free and in remission!!! Yes, you read that right - Cancer free!!! His latest chimerism results showed fighter T-cells are 93% donor cells, myeloid cells are 100% donor, and B-cells are 95% donor! He will be re-checked via a bone marrow aspirate in approx 4-6 months. The bone marrow transplant was a success and we got the best news we could hope for!

He pulled his NG tube out on the morning of October 27th and I didn't tell the hospital, ha ha! We were so tired of having it in, and hardly used it any more, so delayed telling the doctors a few days. I trialled him that day with getting to his fluid requirements by mouth and he was totally fine without it. On his following Tuesday appointment our team were surprised to see it out but completely happy he was still meeting his 1600ml daily fluid intake goal, and we did not need to reinsert the tube. On October 31st his blood electrolytes had balanced out enough that we have been able to lower his fluid intake to approx 1300ml per day. They switched us to bi-weekly visits and if he remains stable, they said he will need only monthly visits now, which is awesome! He has been scheduled for broviac line removal on November 15th! He will be able to have normal baths again!!! And go swimming! This day felt like it would never come and feels like a dream.

Once the broviac line is out we can stop giving Bash his enoxaparin shot. The blood clot in his leg is still there but his body has created new routes around it and there isn't much risk of it breaking free and travelling anymore. He will likely have the clot for the rest of his life and it may only affect him if he plays sports later in life. He can wear compression stockings to help with blood flow if he is symptomatic (ie. his leg swells with physical activities).

For Halloween we all dressed up as pirates. I took Sebastian to clinic for our appointment that day all dressed up and all the nurses and staff loved his costume. This was the first day Sebastian walked around without holding my hand and I literally had to chase him around haha! We took him trick or treating around the bay where we live and he held out his little bucket for candy like a pro, he didn't want to stop and was sad when we brought him home!

We are currently looking into hiring a nanny and transitioning Bash into a day home as I'm going back to work in January. It seems a bit crazy to think we are mostly done treatments, and a bit unfair as many other cancer patients undergo 3+ years of chemo. I'm thankful we have no more chemotherapy, but know that we are far from over. Bash will have many checkups over the coming months and years. He is still at risk for chronic Graft vs. Host disease. And because he had chemo he is also still at risk for secondary cancers later in life, as well as a host of other side effects that may or may not rear up later on.

We have a host of questions to ask our primary nurse at our next appointment about when we are allowed to start taking Bash into public places again, when we can go farther than the city limits, and when we can travel, as well as when we can re-vaccinate, and when it's safe for him to be in contact with other people or even kids at daycares, etc.

In the few months that we've been home full time Sebastian has been developing so much, and so fast it seems. He's grown a full head of hair, learned how to walk, climb the stairs, and gets into everything within his reach. For the most part we are supposed to stay inside and away from public places, outdoors is the only place that's 'safe' as long as no one around us is sick and there are a limited number of people. We get out to the park as much as possible and sneak on the slides if there aren't any kids playing there. On October 21st we went to our first Light the Night walk. It was the first time we had taken him anywhere that crowde, but we were still able to keep our distance from people. We had just found out a few days earlier his 100 day results that he was cancer free and we really wanted to celebrate with others who have battled this disease. It was so much fun! Bash really enjoyed being outside and watching all the people buzzing around and all the dogs too. He is such a friendly little guy and was smiling at everyone and pointing at everything. He got to hang out with his cousin Sam a bit too which was great, and something we really miss doing. We can't wait until we have the all clear that Bash can play and socialize with other kids. He gets so excited when he see's other kids, it's hard to keep him away.

It has been really hard for Nate and I to show our excitement about Bash's progress. Although we are so so very happy, I feel it has been tough to let our guard down. When we first heard the wonderful news from our team that Bash is cancer free, our response was pretty tempered, just 'ok cool, thank you for the news'. When telling family about him being cancer free we got so many happy tears and excited cheers of 'way to go buddy!' and 'we can't believe it!'. We found ourselves wondering why we weren't more excited, and I have realized I'm terrified to accept this as our new 'normal' and then have another let down. Seems a bit silly writing that, and with this realization I am working on trying to let go a bit and enjoy the moment, trying not to worry about the future and what it holds. I am working on being ok without cancer - which is wonderful, but cancer really changed me, changed us, and it's been tough to accept that.

Nate and I have both started to reflect quite a bit as we are coming up on the 1 year anniversary of Sebastian's diagnosis. Planning for Christmas seems to have really brought out the memories from last year and everything we've been through since the diagnosis on December 31st. In many ways it still feels like a bad dream, and I think we are ready to get past this and to finally look forward to life ahead of us again. It has been quite a journey and everyday we are grateful for all the people who were behind us helping to get us through it. It meant so much to us to be with Sebastian and focus on getting him better and we couldn't have done it without our wonderful friends and family.

Thursday, October 5, 2017

10 days to 100

90 Days today! Seems like time has been dragging on and at the same time speeding by like a jet. Sebastian is a rockstar and has been doing awesome! We found out 3 days ago that his body is finally making fighter T-cells, and they are 84% donor cells. This is a good thing, and they should eventually get to 100%. We started weaning his medication (Cyclosporin), which suppresses his immune system making those fighter cells 'lazy' so they won't attack him. With the wean there is potential for graft vs. host disease (GVHD) to rear up, so we are on high alert for any rashes or symptoms showing he could be rejecting the donor or the donor rejecting him. We also learned his blood type changed from A- to O-! Neat. 

This week was the first week we only had to go in to the out-patient clinic once! We have been regulars there lately, heading in at least twice a week to be sure his kidney's were ok and getting fluid boluses when his blood electrolytes (lytes the docs call them) remained high. With the wean of the Cyclosporin we should see less strain on his kidneys and thus a lower creatinine, urea, and potassium. With these lytes balancing out, we can also drop off of giving Kayexalate for his high potassium and we shouldn't need to pump him full of so much water meaning the NG tube may finally come out! Hallelujah! He may start eating foods again.

Next Tuesday (day +95) we go in for our weekly clinic visit, and we have our first bone marrow biopsy post transplant to check the bone marrow for a few things. We want to see if the donor marrow is 100% at the source, and also check for any leukemia cells. Bash will also have a lumbar puncture again to check for leukemia cells in his spinal fluid as they like to hide in there. He will be put under anesthesia for these tests and because he is over a year old now we can do them in the day treatment room instead of going all the way up to day surgery which is much less timely. He wont be allowed to eat anything after midnight and can only have water or clear fluids until 6am - wish me luck on that one as he still wakes 2-3 times in the night for a bottle! 

His day +100 falls on October 15th (coincidentally my mom's bday) and we can stop some of his medications! He will continue to wean with Cyclosporin as long as there is no evidence of GVHD. He can drop to twice a day Acyclovir which he currently needs 4 times a day. We can stop fluconazole completely. If his broviac line is removed (there are plans to remove ASAP as one of the lumens is still blocked) then we can stop giving his once a day needle of enoxaparin. If that line comes out he can have normal baths and go swimming again! We wont need to wrap him up in saran wrap to keep the line from getting wet! He will need to have blood drawn to check it still and the nurses will do this peripherally in his arm with a needle each time, which I can't see him being very happy about, but hey baths!!!

Some big days ahead here. Thoughts, positivity, prayers, and love are all appreciated - it has got us though so much already. I am nervous, terrified really, yet excited and happy. Look how far we have come!  

Monday, September 18, 2017

Days +50, +60, and +70

August 26th was 50 days post bone marrow transplant. We made it halfway through the acute phase of transplant! He is doing so awesome! He finished his two week course of antibiotics Aug. 25th and we started visiting the out patient clinic twice a week instead of daily. He is loving the freedom to crawl around the house and we are scrambling to baby proof everything. He is so close to walking unassisted. His favorite thing to do is have you walk him around the house and he enjoys pointing at something and having you tell him what it is over and over. My dad and his wife came to visit us for a few days, we had a BBQ to celebrate their recent marriage and Bash making it to 50 days. The weather was perfect.

Bash has had high creatinine, urea, and potassium for the past week and every clinic visit the doctors have asked us to get him drinking more and more. August 29th we visited clinic and it was decided an NG tube should be placed again. This was super frustrating for me as Bash had just started eating again and I felt I could give the extra fluids he needed by mouth. The doctor disagreed unfortunately. He has been given extra fluids via IV over 30 minutes through his broviac every one of our clinic visits as his kidneys are working too hard and could be damaged if we don't flush his system. He has also been given a drug to help his body get rid of the extra potassium called Kayexalate and he hates it. It doesn't taste like anything but is very chalky. We mix it in at least 50ml of water and he usually spits it right out. The one benefit of having the tube is we can give it to him through it and he doesn't have to swallow it - he doesn't even know!

I cried like a baby when they put the tube in, Bash screamed bloody murder the whole time too. I really felt like a failure and it felt like the hugest set back. I knew with the tube in he would regress back to not eating which has happened. We have been told by a family friend that has had a tube in before that it feels awful, anything they swallow seemed to stick to the tube going down making him gag so its no wonder Bash doesn't want to eat. Even with the Kayexalate and the extra fluid his potassium remains high and every single visit they ask us to increase his fluids more. Currently he needs 1600ml per day, that's 1.6L! That is more than I drink in a day! It seems crazy to me that we need to push that much fluid into him and it is a full time job making sure he gets it all in by the end of the day. The last time they asked us to increase his fluids I flat out said no, lol. I know he needs it, and obviously do my best to make sure he gets as much as possible, that being said I am up three times a night with him for bottles and then am spending another 30 mins putting water through his tube. During the day we try to get him to eat, then give him a bottle and top him up with water so that he gets at least 200ml or more every couple hours. It's tedious business.

Its actually a vicious circle as the medication, Cyclosporin, that helps prevent rejection of the new bone marrow is what is causing the stress on his kidneys. We were weaning it slowly but stopped weaning it when the results of his chimerism came back showing he has 100% donor cells (awesome!) but that no fighter white T-cells or B-cells have been produced yet and once those come in there is a higher risk of graft vs host disease and in order to prevent that we need to keep his current dose just in case. Once those cells show up we can start weaning Cyclosporin again, hopefully decreasing his potassium, which will then allow us to decrease his fluids and then finally we can remove the NG tube and get him eating again. The waiting is agonizing. I'm sure later on it will seem like it went by fast, at the moment though time seems to be ticking by so slowly. There are many worse things that could be happening, and that other parents in this situation are dealing with and I need to remember to count my lucky stars. It's just fluid, even though I'm upset over it and losing sleep, that's it, it's not such a big deal and in the grand scheme of things, it is nothing compared to what others could be dealing with.


September 10th we had a great day with family at the park. Nate's parents, brother and sister came down to visit us for the weekend, his aunt and uncle from Red Deer were also in town, and we had been long overdue to spend time with cousins that live in the south end of Calgary. Everyone gathered at Prince's Island park, and Bash got to see his cousin Sam who we used to go swimming and have play dates with before he got sick. It was a fun day and so good to have everyone together!

On Friday Sept 15th (Day +70) we had a follow up ultrasound to check the status of Sebastian's blood clot that is still in his right leg. We will get the results on Tuesday this week. We had blood drawn in clinic the same day and the nurse could not get blood from one of his lumens, it was blocked. They put in a clot busting drug called TPA and waited 24hrs but it was still blocked. We had a nurse come to our house to check it again today but it is still blocked sadly. The nurse put TPA in the line again and we will check it in clinic again tomorrow. Crossing all fingers and toes that it un-blocks as a blocked line would mean they will need to have surgery to either replace or remove the broviac line completely. He may only need the broviac for another two months if all goes well, but if he needs blood drawn without the line then he would have to get needles in his arm which I can't see him being very thrilled about.

In other news, Nathan is starting back to work today! He is going back just 3 days a week to start, which is great to ease him back in. It is going to be so strange not having him here with us, and going solo to our clinic visits.