30 May 2013

Never give in, never give up...

The last blog update was the same day that Keian had his Bone Marrow biopsy and LP. Not only were these to ensure remission after transplant, but to also confirm whether Joren’s cells were successful in finding a home within Keian. Throughout the day, he didn’t have much energy, nor did he have much of an appetite. The nurse that evening noticed that Keian seemed tired and therefore decided to do vitals at 11, so that he wouldn’t be woken at midnight. A temperature. Yes. I figured it was nearly a blessing in disguise that they were done early. This is one of the very things that can change on a dime – temperature usually equals a problem, sometimes more minor, but sometimes life threatening. It was the very thing that alerted us to his Meningitis diagnosis back in February. Following the typical fever = antibiotics regimen, the temperature still stuck and once again blood cultures returned negative for growth…wonderful. At first I used to think of this as a good thing. If blood cultures were negative, things were ok, until I realized it could indicate a hidden infection. His counts were coming in nicely at this point, so if it was infection, they were hopeful that his immune system would be able to attempt a save of somewhat. Discharge that was originally set for the Thursday was delayed. 2 days away from being free – Keian was so disappointed. It was partly the fact that we had been making such a big deal about getting out of there and being a family under one roof. We figured in the future, it would be best to not be as open with a definitive discharge date until the actual day had come.

It was apparent by the next day that in fact it wasn’t an infection. His face was seemingly flushed the day prior with red sunburn like blotches and by the next morning, his entire upper body was covered in a bright red, rough, raised rash. There was speculation that he may be getting GVHD (graft vs. host disease), but they wanted to wait another couple of days to watch the pattern of the rash development, as it wasn’t the “typical” textbook case. Textbook case? Isn’t that funny? You’d think by now they’d realize that Keian has never presented with anything by the book. He’s original and he has never done what he’s supposed to do with his diagnosis; it’s been like that from the very beginning. Always responding to treatment in the opposite from what they expect. Having side effects they never expected and even when they do happen, have them be something they’ve never seen before. After he was examined by Infectious Disease, Dermatology and at least 4 additional Doctors, it warranted a “possible GVHD”. By the next day the diagnosis was confirmed. The course of treatment they told us was high dose steroids, which isn’t effective in all children. GVHD in itself can be life threatening if not under control. They told us that if he didn’t respond to the steroids, there was one other thing they could add in the mix. One, just one. When I asked what happens if that didn’t work, I was told that it gets “complicated”. But, after 3 days on the steroids, we began to notice the rash getting darker and smoother. It was working! 5 full days of the high dose and then the weaning began. It took nearly 10 days for a full wean, but I am so happy to say that last Friday was his last dose and the rash is nearly completely gone! There is still residue from when the skin was peeling, but it doesn’t look like much more than dry skin. Unfortunately, GVHD can rear its ugly head at any time and can affect many things. Keian was diagnosed with Grade 2 skin GVHD, which can flare up again tomorrow, years from now, or never again. Many things, like the sun, scratching or any other type of irritation can cause it to flare up. We can only be careful and diligent.

Although the GVHD diagnosis delayed his discharge by 2 weeks, we are finally out! You heard me, but hear me again, loud and clear. WE ARE OUT! You have no idea how many emotions come along with this all. Technically, Keian is done treatment. Although we return to the Oncology clinic a few times a week for blood work and possible transfusions, this is it! Honestly, it scares me to hell to even mutter those words across my lips. The BMT was Keian’s “last” chance, but we are hopeful that this is the only chance he’ll need! Discharge day also brought results from his bone marrow biopsy, LP and chimerism test. I don’t think we’ve had a bigger smile than we did that day. Not only did his bone marrow and LP come back clear of leukemia indicating he was still in full remission, but the chimerism showed that it was 100% donor cells!!!! Joren’s cells were now inside Keian and doing their job; creating themselves a new home and beginning the huge feat of making his new immune system from scratch. This is the best case scenario and exactly what everyone was hoping for, not to mention that it’s definitely what he needed!!! What we hope for is that if there are any residual leukemic cells left that are hiding, that the new immune system will recognize them as foreign and beat them with a sack of potatoes until there’s nothing left. The type of leukemia that Keian has is known for hiding, which is the very reason why it was necessary for Keian to receive the radiation, as well as the myeloablative chemo prior to transplant. All of this in the hopes that it eliminates the possibility of a relapse. Every day that passes increases his chance of a permanent cure. So far, we’re at day 55 – post transplant!

On Sunday night, we received a call from the Oncologist to say that his cyclosporine levels were in the toxic range and we needed to come in the clinic first thing to have the levels taken again. At that point, he seemed well, and wasn’t having any symptoms, but it was discovered he had yet another fever. It’s pretty redundant – when this happens, it follows a certain protocol. Cultures are taken to test for infection, antibiotics are started to ensure that it cannot grow further and Tylenol is given to take care of the fever. This time, they wanted to see how the fever progressed, and therefore Tylenol was skipped. After 3 days of IV antibiotics and negative cultures, he broke his fever last night! It was getting harder to wake up every hour to take his temperature and to make sure he was easy to wake, with no additional symptoms.

Today, we received another call saying his cyclosporine levels were high again today and to hold his dose until they tested again tomorrow. Keian is on medications that will help to prevent certain infections, one of which is fluconazole to prevent fungal infections. Apparently, in some kids, this can sometimes interact with the cyclosporine and cause high levels. I have a feeling there will need to be a lot of adjusting of his dose throughout the next couple of months. They hope to have him off cyclosporine as soon as possible - it may very well be the one thing that is helping his body to accept Joren's cells, but it is also suppressing the new immune system from forming completely (this can take up to a year from transplant).

He has exceeded all expectations despite all that has attempted to stand in his way. He has been through so much and has grown up beyond his years. Luckily, he hasn’t lost everything that makes him Keian. He’s still our goofy, loveable and caring boy that everyone has fallen in love with. It’s come to that time that he deserves. Time to be a kid again; to play, explore, discover and to build upon that brotherly bond that was seemingly pulled from him and Joren upon diagnosis. We can see it strengthening already. The first night at our Vancouver apartment, amongst the chaos of unpacking, we saw Keian and Joren playing together in the living room. We knew at that point that no matter where we are, as long as we are together, we are home. We’re back to sleeping within the same four walls, albeit in beds that are not our own. The furniture is not ours, the style is not ours, but the laughs we share are. The family hugs, kisses, tickles and squabbles are all ours. That’s what matters.

Keian’s journey is far from over, but it has taken on a new challenge – to live. To cherish all we took for granted. To accept that some things cannot change, but to be hopeful and to never give up. It’s an incredible journey that we, as odd as it may sound, are all lucky to be able to share with Keian.

6 May 2013

Mommy's miracle...

I didn’t realize it had been this long since I did a blog update. The days just seem to fly by and by the time we sit down for the day and actually have time; we’re so tired that there is no energy for typing. I was joking this morning about how I got 3 magazines over a week ago and every night that I’ve been over in the trailer I try to look through them and then I end up falling asleep…I don’t think I’ve made it through even one! We’ve come a LONG way in 15 days since our last update. Keian moved over into what they call step down, last Wednesday. Once his ANC reached .50 for 2 consecutive days, he was moved out of the small isolation room over to a larger regular room. The same precautions stay intact, only gowns are not necessary. Our hands have gotten so raw they are nearly bleeding by the end of each day.

Keian has once again blown us all away. He has surpassed all expectations, literally. The day he moved into step-down, he was up jumping around in his bed and walking in circles around the ward almost non-stop for 30 minutes. This all coming from a boy that was continuously bed bound for nearly a month. At first glance, there is no way of telling how sick he truly is. Other than his beautiful bald head, he looks so healthy, so vibrant and full to the brim with vigor and grunt. Yes, I said grunt! I’m talking about a kid that is already wrestling with his Daddy on the bed, one that is jumping from his bed to ours and one that has no problem with moving on a dime. He is literally a miracle in the making. His blood pressure is now under control, but he still requires daily medications to keep it that way. We have seen no sign of rash in the past 4 days, which means that his engraftment syndrome has likely diminished due to the steroids. They’ve switched him onto oral meds to get him ready for discharge. We have already been given a tentative date of discharge to be this Thursday. It’s almost surreal. We expected to be here for close to 2 months, but we are leaving 3 weeks ahead of schedule! I’m over the moon excited, but there is always that little voice inside that is cautious. Yes, I’m scared. Of what I’m not completely sure. We will still be coming back here 3 days a week, so I know he will be well taken care of and monitored. The most important thing is that come night fall, we will be fast asleep with our entire family under one roof, which hasn’t happened since January, except for a brief while after his admission for meningitis. To say that it’s been a long time coming would be an understatement.

On Saturday, we were given a pass to go to the park. It definitely tired him out, but it was so nice to get out and get some fresh air. It was the first time that he has inhaled air other than from his room in over a month. For the next 3 months, we will be very isolated. Isolated is great, it means we’re together. He is not allowed to go to any busy public areas. We’ll also be avoiding the beach and water parks due to infection risks being so high for him. His immune system will not function properly for nearly one year. The construction here on the hospital grounds has kicked up a notch or two and they don’t feel that the trailer is safe for Keian to stay in due to his newly forming immune system. They have even closed the patios to the children most at risk. The hospital has found us an apartment just behind VGH that we will be staying in for the next couple of months while Keian continues that last of his journey. The last of his journey…it’s still hard to get those words out of my mouth. He was moved into room 8 for step-down, which is the very room that he spent most of his initial diagnosis. I see this as a very positive thing – he started his journey in here and he’s ending it in here. Though I will not view his journey over until we cross that 5 year remission mark, we’ve made it through the first.

He has started eating now that the mucositis has subsided. I certainly wasn’t expecting that to get as bad as it did. There were points where he wasn’t able to speak or swallow his own spit. So far, he has avoided the NG tube and that’s become his goal…to avoid it completely. The decision will be made on Tuesday, but if he continues the way he is going, I will push for them to discharge us tubeless. It can always be inserted at a later date should it be determined he’s unable to keep up adequate nutrition orally. This would also give him some control, which he doesn’t have much of through this process. So far, the only physical affects that I have noticed due to the BMT regimen is his skin. Many areas have darkened and become tough like leather, the worst being his neck. I’ve been told this is likely the radiation and with proper care should diminish over time. If you’ve seen us in the summertime, you’d know how I joke about Ryan and his sunscreen. Being a fair-skinned ginger, he burns at the first sign of the sun. Casper. Yes, that’s exactly what he looks like. Thick globs of white sunscreen drip off him like cool whip melting off a spoon. Ok, maybe not quite that bad, but he could definitely pass off as Casper’s side kick. This year, Keian will be right along with him. The radiation that Keian had puts him at a very high risk for skin cancer. That being said, it is necessary for us to seek shade whenever possible and avoid overexposure. Once we’re all moved into the apartment, we’ll be sure to take his covered wagon out of storage. We got it last summer for days that he wanted to be outdoors, but just didn’t have the energy. This year, Joren is also old enough to sit in it with him, so it’ll be nice to be able to take them on walks. This will be a good thing being in Vancouver. I told Ryan the other day that it’s kind of growing on me and he gave me the look. I agree, I’m more of a country girl myself, but when you’re here in this city and you see all that it offers, it’s hard not to love something about it. It makes me want to strive to be healthy again. Healthy. That’s a word I would love to say and actually mean it. For my whole family, that is my one true wish. To be happy and healthy.

On Tuesday, Keian goes for a Bone Marrow biopsy. This is where they will look at chimerism, which means they are looking to see if the cells are all Joren’s or a mix of both Joren and Keian. We need for them to be all Joren’s. If they are a mix of the both, they will need to try to wean off the anti-rejection drugs with the hope that Joren’s cells win the fight. That’s all that needs to be said. I’m scared as hell, more so now than ever before. I may be scared, but I’m hopeful and my positivity is heightened every day I see this little boy smiling, laughing and living his life despite everything.

Keian has proven his strength over and over and I don’t expect that to stop any time soon. Keian, you are Mommy’s miracle.