Countdown to Transplant

For the last few weeks we have been counting down to our transplant date. July 7th. I am a mixed bag of emotions. I was surprised that when I got the call, the first thing I felt was excitement, followed swiftly by sheer terror. Excitement that this next chapter is starting, and I can see a light at the end of the tunnel. Yet terrified that we have to do this, that something could go wrong, and that I could lose my baby. 

Having a date has made transplant seem so very real, and it is starting so soon. We will be admitted to the hospital on June 29th and Bash starts chemo to wipe out his bone marrow and immune system on June 30th. The Bone marrow transplant team counts down from -7 and on day 0 Bash will receive his new bone marrow - July 7th. 

As you can all imagine, I have been a nervous wreck and a not very fun person to be around for the past few weeks, trying not to think of worst case scenarios, going over and over what could go wrong, and doing my best not to google any side effects or issues that could arise. I feel like I have been in a very dark place, it has been really hard to stay positive. I'm not sure you can ever be truly ready for something like this, and as much as I'm dreading the day we have to head in, I am ready to be on the other side of this, we all are. If only we could push the fast forward button just for this one part. The next few months will be extremely difficult.

Along with all these emotions we did receive some amazing news! The bone marrow aspirate Bash had a few weeks ago found NO LEUKEMIA CELLS!!! The last phase of chemo finally put him into remission! Our bone marrow Dr said that this is the best case scenario going into transplant. Yes, we still have to do the transplant. The cells are still present that mutate and cause cancer and we want to wipe those guys out too. Once the donor bone marrow is transplanted it only needs to grow and take hold, it doesn't need to also fight any remaining cancer cells, which is a huge relief. As terrifying as this process is we do have so many positives going our way. We have the best possible match (10/10) for transplant, we are getting bone marrow not just stem cells (it's more painful to donate marrow but more effective), a new treatment protocol that is less harsh without needing radiation, and now the cancer is finally in remission just before we start this phase. Sebastian is healthy, happy, and has been so resilient through all of this. Truly a miracle, and the best we can hope for. I'm sure he'll continue to dazzle the whole oncology unit, he is such a little flirt and loves all the attention.

Last week our family put on a fundraiser. Their idea started out as a small steak night gathering and quickly turned into a full on extravaganza that filled a hockey rink! It was a great success with a huge turnout. We wish we could have been there, but from what we've heard it was an incredible time. We have the most thoughtful and supportive family anyone could wish for. They gave so much time, effort, and love to make it happen. The community really came together and we are so fortunate to have so many wonderful people behind us. Here is a handful of our All Star family with their #TeamBash shirts at the ball tournament they played in the next day. Love you guys all so much.

Bash is One!

It's been a few weeks since I posted, but for the most part of the last few weeks we have been at home!!! And not just any home, we moved to a new house last weekend! We love it! There is so much more space for us to spread out in, a beautiful backyard to enjoy for the summers, and breathtaking mountain views. We couldn't be happier about it. It's also much closer to the hospital which is great - we've put 5000kms on the car since February driving back and forth to the hospital. Now we're only a 12min drive away!

Sebastian also turned one last weekend!!! ONE! I'm not sure how he grew up so fast, but he did, and we celebrated with a BBQ and some close family in our new backyard. The weather was perfect, Sebastian was spoiled rotten, and we enjoyed visiting with everyone. Unfortunately we couldn't have any little friends over to celebrate with us this year, but hopefully next year. We can't wait until he can play and interact with his friends, he gets so excited any time he sees someone his size.

Our amazing cousins and family are throwing a fundraiser for Bash on June 23rd "Cash for Bash" and if anyone would like to attend or for more info you can follow the link here. It's incredible how big it's gotten already and people have donated some awesome prizes so far!

Bash has had a few blood count checks in the past weeks that were low and he required blood transfusions/platelets for and although those days we spent all day in the out patient clinic, we are glad to not be in patient. Tomorrow (June 12) we head into the hospital for a lumbar puncture and bone marrow aspirate. Just a quick day procedure. The results will not change our course in any way, but it will be good to know what his baseline is, and if there are any leukemia cells remaining after this last round of chemo. Other than the quick blood counts every 3-4 days or so, and one last exam for his eyesight, we will be home for the remainder of June - as long as he stays healthy (fingers crossed).  We don't have an official date set yet for transplant, just near the end of June, hoping we find out the exact date soon. For now we are enjoying being home so so much and getting a taste of what 'normal' life is.

The road to transplant

It has been a long six week stretch in the hospital and much of it on isolation. We were finally discharged on Thursday (May 18). We got to spend the long weekend at home while we wait for Sebastian's counts to recover before we start the next and final chemo for this round, High Dose A-RAC.

We met with the bone marrow transplant (BMT) team on May 10th and got the latest info. We have two 10/10 HLA bone marrow matches (best possible) which is pretty amazing! We will likely start the transplant at the end of June, once he has had all the pre-testing to be sure his body is ready, and once he has had a bit of a break from this last chemo round. There was a lot of info and it was very tough. You know those commercials about drugs and all of their side effects that make you wonder why anyone would take it?! That's how this meeting felt to me. Nate and I both felt disheartened and on edge after.

There are three stages Bash will go through for transplant:
1. Conditioning (to prepare his body)
2. Stem cell/bone marrow infusion (like having a blood transfusion)
3. Engraftment (donor cells find their way to the bone marrow and start to grow)

For conditioning they use a high dose chemo (Busulfan) to wipe out his current immune system and then drugs to suppress his immune system. The chemo and meds are given over 7 days, and they will be very hard on his body. He will lose his hair and nails, get mouth sores and skin breakdown which will require pain management, he will have nausea and vomiting and require nutritional support, he may have seizures from the chemo and will be on an anticonvulsant, he will be at an extremely high risk for infections - life threatening, and may require ICU support for blood pressure and breathing support and will receive precautionary antibiotics, bladder infections causing bleeding, he may get veno-occlusive disease, fevers are common, rashes and risk of allergic reactions, risk of infertility, and he is at risk for secondary cancers later in life. Still with me? Cause I blacked out somewhere after seizures.... This is so scary, he is so little, and I hate having to put him through it - Fuck you cancer.

During conditioning they also give radiation. This step is one we are very uncertain of and questioned our BMT doctor about it. He said it's a small dose (400 cGy) and it has not shown too many development issues later in life for other patients, but still a risk. Bash will have to get total body irradiation, not pinpointed on one spot as his cancer is literally everywhere. He will be at risk of a secondary cancer later in life, and will most likely be infertile if the chemo hasn't already robbed him of that.

After conditioning he gets his stem cell or bone marrow infusion. The cells are infused similar to a blood transfusion over 1-4 hours through Bash's central line. It will take 2-3 weeks for engraftment to happen - this is where the stem cells find their way to his bone marrow and start to grow. He will continue to have nutritional and pain management support. The transplant team will also continue to be on the watch for the side effects I listed above. Bash will now be at risk for graft vs. host disease (GVHD) and similarly, host vs. graft disease (HVGD). GVHD means the new donor cells don't recognize their new environment and start to attack it. In HVGD the host 'kicks out' the stem cells resulting in rejection. GVHD may be acute or chronic and acute can happen within the first 100 days. He has a 20-40% chance of developing some form, usually mild, and it is treatable with steroids. It is also slightly beneficial to have a small amount of GVHD as he would get graft vs. leukemia effect which may mean he is less likely to relapse.

Bash will be given 2 drugs to prevent GVHD:
- Cyclosporin - given 2x day for 2-3 months
- Methotrexate - given 4x after the stem cell infusion.

Chronic GVHD occurs after 100 days, is less common occurring in 10-20% of all patients, can be mild, moderate or severe, can affect any organ in the body, and is treatable with steroids.

A month or two after the transplant his blood counts will start to recover, healing will start to occur and he will be prepared for discharge home. Once we are home we have to be very careful still about exposure to crowds and people who are sick for at least 6 months. Bash will have his blood checked at least 3 times per week in the first few months to see that he doesn't have GVHD.

So back to that uneasy feeling we had about radiation and the harsh chemo drugs with all the nasty side effects. We mentioned our concerns to our team, and our doctor did some research. There is a different chemo med that they have been using in Europe since 2007 with really great results - so good in fact that over 70 hospitals there are currently using it and they are in the process of getting it started in Canada. This chemo drug (Treosulfan) is much less toxic and will lessen the side effects I listed above, have less risks of future issues, and it is used without the need for radiation with the same percentage of a cure (80%). Here and here are links to the study. This drug has been used in Canada for immuno-compromised children with great success but has yet to be used here for Leukemia patients getting a BMT in Canada - we would be the first. Our doctor agreed that this would be an excellent treatment plan and assured us the whole team is knowledgable and comfortable giving it. After a week of research and contemplation we felt this option with less risks, less side effects, and no radiation with the same rate of outcome for a cure would be the best for Sebastian now, and in the future.

In other news we are moving to a new house at the end of May! We will be closer to the hospital and have much more space. Then we have Bash's first birthday on June 4th! We hope he will be well and finished this last chemo so we can all be home to celebrate. We are very excited and have a busy couple weeks ahead.

Giant Pain in the Neck

Sebastian has had a tough few weeks. Just keep swimming has been my mantra lately. Waiting for news about the Bone Marrow Transplant, continuing chemo treatments, trying to keep his weight up, and lots of in patient hospital time. We also had the NG tube put in - it lasted all of five minutes after the first time in, and he pulled it out another two times after that before we gave up. He was able to pull it out with mitts on even! It was more stressful than him not eating, trying to make sure he didn't pull it out and having to come back to clinic to re insert it.

After Sebastian finished his Dexamethasone week from hell - he was a baby monster - not sleeping, so hungry but only eating yogurt and Pediasure, and super clingy and emotional, crying all day - we were all exhausted and ready to start the next chemo and forget Dexamethasone exists. On the last day of his steroid he had to fast for his lumbar puncture procedure as they put him under anesthetic. How do you tell a steroid raging hungry infant he can't eat for 7 hours while we wait for a quick 20 min procedure?! He was absolutely miserable and he made sure to let everyone in the oncology clinic know it! Strangers were walking by staring at us like why the heck can't you stop your kid from crying? Believe me I wish I could have comforted him somehow, he was having none of it. After being delayed (this always seems to happen), waiting what seemed like an eternity and being so frustrated with the system and questioning how necessary all this garbage we are putting Bash through is - even losing faith in our team, we got his procedure done and over with. Phew.

The next few days he turned back into the normal happy lil guy we know. We started high dose Methotrexate (HD MTX) again and he cleared it out of his system so fast this time that the doctors were questioning whether or not the treatment was effective, and for his next dose are thinking of not hyper hydrating him as much. (Remember the first time he had it he had trouble clearing it and had toxicity and they ordered a special med from Vancouver?). They already have the medication on hand and ready to go for this next round, hyper hydrated or not.

Last Saturday (Apr 22) we were discharged home, only to return Sunday afternoon after battling off and on fevers overnight. On top of that his skin started to react very badly to some previous spots on his back where he had bandaids. The HD MTX he had the Wednesday before (Apr 19), which causes rapidly dividing cells to break down, was seriously affecting his little body in a way he has not reacted before - even though he cleared it so fast! Doctors expect most children having this chemo to show some signs of breakdown, especially in their mouth. This was Sebastian's fourth time having HD MTX and his first time showing any ill effects. That night was awful and we were super worried about him. His fevers continued and he was definitely having pain. Our nurse was also very concerned and kept a close eye on him. His blood cultures taken to check for infections also showed his platelet count was only 13 so a STAT platelet infusion was done. Nathan stayed the night with us and we shared the tiny parent bed as best we could, both of us curled up on either end. I don't think we really slept. In the morning we noticed Sebastian had started getting blisters on his poor back that turned into open sores. Any spots on his body where he had slight skin irritations flared right up.

He then got mucositis in his mouth so bad he refused to eat and even breastfeed. He started having nose bleeds, bleeding gums and lips. The doctors started him on a morphine infusion to help control his pain, TPN (total parenteral nutrition) to keep him strong as he was not eating, and antibiotics for the fever. He then had blood for more low counts. He had us so worried about him.

As if all this wasn't enough bad luck, the day after Nate spent the night, he woke up with a kink in his neck and spasms causing him so much pain he couldn't get out of bed! I sent my brother over to the house with Robaxacet and had him check up on him. Nate was out of commission for the day. My brother brought me lunch and I got a nice visit with him. Nathan went for a massage the next day that allowed him to at least slightly move his neck and he was able to get to the hospital to be with us again.

Bash is finally on the up we think, and nothing grew from his blood cultures. He was taken off of isolation on Friday. The morphine infusion was slowly decreased and was stopped today to see how he feels. He has been a little monkey and learned how to pull himself up on things this week, he is getting into everything! He is so funny and amuses us more and more - his little laugh is infectious, and he has every nurse and doctor here wrapped around his little finger! We got a one hour pass yesterday too and we went for a walk in the park next to the hospital, ahh freedom! He has one more dose of HD MTX which was supposed to start last week but has been postponed until possibly tomorrow - I am dreading it and hoping he does not react like he did ever again.

In other news, we have three possible bone marrow matches! There is further testing happening to narrow down the closest match and we have a meeting scheduled for May 10th to find out all the details about this new road we are headed down. He had a hearing test today which he passed with flying colours, and will have his eyes and teeth checked out as well to make sure he is healthy and ready for transplant. He has two new top teeth that popped out (top middle and top left) and I'm looking forward to finding some new foods he can get into.

Blessing in Disguise?

It's been 11 days since we found out Bash needs a bone marrow transplant (BMT). It wasn't the news we were hoping for. We had hoped that the chemo was working and it would put him into remission. It was another kick in the gut. The BMT does have a riskier path, but also comes with a better chance of a cure. In some ways it feels defeating, but it also feels like the right path deep down. If we had gone through chemo and in a year or two had the cancer return (possibly more aggressive) we would have to take this route anyway. Since Sebastian has a blend of two types of Leukemia (80% ALL, 20% AML) we feel like this might be a blessing in disguise to take this harder road and be rid of this disease now so that we can move on with life and put this behind us.

We have been overwhelmed with people asking how or if they can donate to him. I've been holding off writing an update hoping I would have answers by now. We have been patiently waiting to talk with the bone marrow transplant team about our next steps and what treatment is going to look like now. The day we found out, a BMT nurse gave us some info, but since then no one has come to speak with us which has been very frustrating. We have many questions and seem to only have more as the days go by.

This is what we know so far, and I will update again once I know more. Bash has been entered into the international bone marrow database, they pull matches from around the world. It can take up to 10 weeks to find a match. We were told we would probably hear about a possible match by 4-6 weeks. Nate and I only have a 2% chance of being a match. Family and friends can not donate directly to him, but you can go to the Canadian Blood Services website here and sign up to be entered into the national database to be a donor for not just Sebastian but for other families who may be in our situation. The chances of you being a match for Bash are one in a million, but maybe you can be another families one in a million.

Currently we are in the middle of the re-induction phase, not consolidation as I had written in my last post. This phase consists of chemo meds we saw in the very first phase and Dexamethazone, a steroid which makes Bash very emotional and extremely hungry all the time. We have been discharged once for a few days already this round and sent on a few passes and extended passes. Right now his Absolute Neutrophil Count (ANC) is recovering from zero, so we are back in the hospital until his numbers come back up. On Wednesday (Apr 12) he gets another Lumbar Puncture with chemo injected into his spinal fluid, then resumes a week of Dexamethazone which ends this phase.

Doctors started pushing for a nasogastric tube again today as his weight has been stable but no gains since January. We have been feeding him full fat 11% greek yogurt, avacado, oatmeal, macaroni, pizza - really anything that has a high fat content or that he likes. We even add cream to his water! The weight just wont stick. We are going to have to put the NG tube in soon so we can try to get his weight up before the BMT

happens. I hate it - I feel pushed into it, but he needs to be healthy and he needs to start gaining so he can be strong for the road ahead. I just really hope having the tube will not hinder him from eating and drinking normally or cause any adverse effects - if you can't tell, I have extreme anxiety about it.

Bash has been such a fighter through all of this and we couldn't be prouder of him and the accomplishments he has made so far. Not just in treatments but in growing up with all these road blocks. His resilience is astounding, his strength and courage through this amazes us, and has been helping us get through this. When we are home we have been getting outside to enjoy the nice weather. We took Bash for his first bike ride in his chariot this past week and he absolutely loved it!

Long Story Short

Feels like forever since I updated... I'm mostly frustrated lately. This last round was tough and it felt like we didn't know what was going on a lot of the time. There seemed to be a big disconnect with the doctors, nurses, and team about Bash's care and letting us in on it.

I was feeding Bash lunch one day, only had a shirt and diaper on him as its way less messy that way, and our nurse came in to do an assessment and said he looked mottled to her. I said he was cold from the no clothes and needed to warm up - he looked normal to me. Well apparently she felt differently, and hey - great that she was watching out for him, but she told the new 'baby' doctor on service that day, who took one look at him, decided he was tachy (fast heart rate), and showing signs of infection?! Ordered a fluid bolus, a blood panel to check for infection, and started antibiotics (that means no passes home for us). I should have stood my ground, made them wait an hour, as I knew he was fine. Low and behold, two days later nothing grew from the blood cultures and antibiotics were stopped. I'm glad they were on their game but it was unnecessary and I felt like no one was listening to me.

We battled to get a few overnight passes since he was all clear for infection, not receiving any meds, and had high counts. We weren't discharged home like we had thought as our oncologist wanted Sebastian admitted because his immunity was expected to drop from the last week of chemo. Once his white blood cell levels dropped to zero, we were confined to our hospital room, twiddling our thumbs. Waiting is the worst.

I seriously could go on and on about these small little inconveniences that kept happening this round. They really don't matter that much by themselves but they kept building up and really had us feeling disconnected from the hospital team. We saw him as being happy and healthy (his blood counts were good, and he was feeling well) where doctors and nurses seemed on edge and uneasy over the smallest things. We questioned ourselves if we should be more concerned and cautious as well. Were we missing something? By mid week his counts started to come up again and we were in the clear. No fevers, infections, or virus's materialized despite the doctors worries thankfully. (Side note - I'm a tad OCD and disinfect the room three times a day haha).

Finally we were discharged! The weather has been warm and we got outside to enjoy it - forgetting about any other chores and things for the time. We needed this break and enjoyed being together as a family again - a small glimpse into the future and something to hold onto as we head back into another hospital admit and more chemo.

The BMA (bone marrow aspirate), the BIG one, was done this past Friday (March 24th). Sebastian also had his broviac line changed as his last one was blocked and not working properly. To get these two procedures done together so Sebastian only needed to be put under anesthetic once, was another huge headache I wont go too deep into. Basically there was a miscommunication on times between the two teams as different doctors do each procedure. We were told different places to go for admitting, different and wrong explanations on how the line was replaced, didn't know which doc was doing the BMA, and told different start times - even re-scheduled once. Just when we thought we had it all figured out, waited our allotted time in clinic, had gone up to the induction room for the surgery, they realized both teams had the time wrong and we were sent back down to wait more. Sebastian was so hungry he was nearly inconsolable. How do you tell a 9 month old he can't eat for ten hours?

We finally got him in, the procedures done, and enjoyed a beautiful weekend at home. We get the BMA results on Wednesday, and also get admitted for the next phase of treatment (Consolidation Phase), which goes ahead no matter what the BMA results show. 

Finding it really hard to stay positive, optimistic, and not complain about everything. Life seems to be at a standstill while we wait for the chemo to do its thing and the results of the last bone marrow biopsy so we have a better understanding of our path ahead. Everything I can cross is crossed. Trying our best not to think about it and worry. Cross that bridge if and when we come to it.

Back on Track

What a roller coaster couple of weeks! After the first Methotrexate (MTX) round, delay in clearing, and high toxicity side effects, Sebastian started the next round of MTX chemo two days late (Thursday Mar 2nd). The doctors started him with extra fluids earlier for his second round, and he ended up clearing the MTX in two days as normally expected, and without the extra swelling or skin breakdown we had last week. Friday morning Grandpa and Grandma Knutson were back in town from a trip to Phoenix, and they came to the hospital for a visit. They brought Bash a fancy new hat! I'm not sure who was more excited the grandparents or Sebastian. Bash also turned 9 months last week! Time is flying by.


He did really well this past round and we were discharged home on Sunday night as his next chemo would be due Thursday. We had a lovely 4 days home and it was great to sleep in our own beds without interruptions or IV alarms ringing off. Grandma cooked so many delicious meals, and grandpa would get up early so Nate and I could sleep in a little bit. On Thursday morning (Mar 9th) we returned to the hospital for more chemo. We started out in the out-patient clinic at 9am, where they draw blood and send it to the lab to make sure Sebastian's counts are ok to start his next chemo. There is a lot of waiting around in clinic. after his blood work was taken the nurse did a quick checkup. Then we waited again and the doctor came and did another checkup. More waiting. Once his lab work came back and his counts were good, the doctor gave the go ahead to start. Then the chemo was ordered and they make it from scratch in pharmacy, more waiting. This chemo round is given while in-patient so we had to wait for a room in the oncology unit. We waited in a 'room' (basically a crib in a hall with curtains around it) where Bash was hooked up to IV fluids while we waited for the chemo to be made. We tried to get him to nap - hard with a baby who is such a light sleeper to begin with, in a new environment, in a noisy hallway with other patients around, announcements on the hospital intercom, and nurses coming to check on him constantly. We didn't get a bed on the unit until almost 3pm, and our chemo still wasn't brought in from pharmacy.

Once in our new room, another check up was done and the chemo finally arrived and was started. This round he gets Cyclophosphamide, Etoposide, and Mesna - No more Methotrexate this round thankfully. The new chemo's he gets can cause bladder irritation and bleeding, the Mesna is to help prevent that from happening. These drugs are given by IV over 2 1/2 hours, Mesna over 4 hours, daily for the next 5 days.

Bash was an overtired, emotional, nauseated mess on Thursday night and was up every hour or so. We got him on a better schedule for anti-nausea drugs the next day and he had a couple good naps and slept much better the next night. Because he is so nauseated he isn't eating well and the doctors have been really pushing for that nasogastric tube to be put in. I begged for one more day on Friday as I still feel his fluid intake is sufficient, its getting him eating thats the trouble. Our nurse agreed she doesn't think we are at the point of inserting a tube just yet, we need to get on a better anti-nausea regime. I'm afraid if we put the tube in he will feel full and wont eat for that reason and if he is already drinking well it seems silly to put it in to give him what he is already willingly drinking. His weight has been stable, and I agree with the doctors that we want him to grow, but I'm just not ready to accept that he really needs it yet. I'm hoping after this last chemo round and a bit of a break that he will feel hungry again and we can find some foods he will eat. If not then I will grudgingly accept the stupid tube that is giving me so much stress and anxiety.

Saturday night we were given an overnight pass home - yay! As we were leaving the hospital Bash started to feel warm to me but his temperature was ok. We got home, had supper and he started getting really fussy and did have a fever of 38.1 - If he gets a fever at home of 38.0 we are to monitor it for one hour and return if it remains. If he has a fever over 38.3 we have to bring him back immediately. We monitored him closely for an hour, we had our bags packed up and were ready to head back to the hospital. 38.2 was his highest temp, then thankfully his fever broke. I called the unit to be sure they wouldn't want us to return and we were told to watch him closely overnight and return if it spiked again. It didn't and we decided he must be teething - knock on wood. If he gets a high fever they start him on a 10 day course of antibiotics, pause the chemo treatments and we wouldn't be able to leave the hospital. We really don't want another setback or delay in his treatments.

Bash has one more day of chemo after today (Sunday Mar 12) and we will hopefully be discharged home until the next phase.  He has an out-patient appointment booked already for March 20th where he gets G-CSF (Granulocyte colony-stimulating factor) which will stimulate his bone marrow to produce cells. They do this as an injection into fatty tissue and he gets 6 doses, the first in hospital, then the others at home twice a day. On March 23rd he is scheduled for a bone marrow aspirate - the Big one that will tell us what our next plan of attack is.  If they find Blasts (cancer cells) in this one then he will need a bone marrow transplant. If there are no Blasts then we continue with chemo onto the next phase (Consolidation Phase).

We are looking forward to some much needed rest and recuperation in the coming days and have all our fingers and toes crossed for remission. You got this Bash! We all love you so much! #teambash