DAY +23 Post Transplant Highs and Lows

The last couple weeks since the discovery of this virus, which invaded our little girl’s body, have been physically and emotionally draining for Abbigail, myself and our family. There have been so many ups and downs, highs and lows and far too much uncertainty.

Abbigail began to show signs of improvement come Monday, she was feeling more energetic and less irritable. She had longer periods of “play” and was able to tolerate increased tube feeds.

IMG_7046.JPG

IMG_7047.JPG

IMG_7050.JPG

That progress was swiftly stolen as she had to undergo an other surgery to replace her central line that had caused her so much torture, pain and frustration the week prior. She went into surgery breaking my heart with her fearful and terrorized cries, and she came out with a new but equally frustrating line, more bruises than I have ever seen, a large hematoma on her neck and shoulder and a few more scars added to her battered body.

IMG_7049.JPG

IMG_7048.JPG

Progressively throughout the week I watched her wakeful moments get shorter and further apart, I anxiously tracked her lowering blood counts and I feared we may be facing a bigger monster than “they” believe. I knew this virus and the treatment to help tame the virus could potentially affect her counts however the doctors were confident that because she ENGRAFTED this week, that it wouldn’t affect her too much. That does not seem to be the case and I am sad to report that her engraftment was not hugely celebrated, as it should have been.

IMG_7058.JPG Once a transplant patient engrafts (begins to produce their own cells), they usually begin to heal, their ailments quickly improve and they are slowly weaned off the medications and sent home shortly there after. We knew this wouldn’t be the case for Abbigail since she is up against this virus, with a post-transplant immune system. Although we have successfully weaned her off of the IV nutrition and the “drip infusion” of hydromorph, she is still on an uphill battle. She has not “eaten” by mouth in weeks and has not taken even a sip of fluids by mouth either. She continues to show frightening signs of viral infection and we haven’t seen a decline in her viral load to date.

I am happy to say that it isn’t all bad; Abbigail still sits up and paints my if toe nail some mornings, she still fights the nurses on vitals and she always smiles when the clown pops in her room. She was at one point last week, laughing, playing and joking around like there was nothing wrong…this was hugely celebrated and noticed by all! She appeared so well “clinically” that her team felt she was ready to be transferred to our home hospital! There was talk that we would aim to have everything in place for a transfer this Tuesday. The thought of taking Abbigail out of this protective “bubble” and into the world outside these unit doors has me in knots. The fear of what I know is possible is sometimes paralyzing but I can not let that fear interfere with Abbigail’s healing or recovery. Going closer to home, to a hospital she has grown up in, with her friends and familiar faces would bring a type of healing we can’t find here. So I quickly set my fears aside and celebrated this milestone the way it should be celebrated! Abbigail has been talking about seeing her Daddy, Molly Penny (home hospital clown), Pam and Jen and all her warrior friends. She was so happy when I told her what would be happening soon.

Unfortunately, over the last 48-72 hours, I feel we have gone backwards again. We are back to her sleeping all the time, aches and pains, higher heart rates, creeping temperatures and highly noticeable OMS symptoms…which all lead me to fear possible secondary infections or the virus spreading further and faster.

We are still holding on to hope that we can keep her stable enough to travel to CHEO next week, but reality is that we are constantly at the mercy of illness, OMS and the world of cancer.

IMG_7059.JPG
Sweet dreams my girl. Rest your body. Mama is always here…

DAY +18 – The road less travelled

Would you believe me if I told you my neutropenic but afebrile girl was sick? If her vitals were only slightly elevated would you think I was paranoid? Do you think you know enough about OMS because you read an article and a few pages of her chart? What if I insisted something was wrong, would you believe me then?

Abbigail is 1 in 10 million! She defies all odds and sneaks within every minority she possibly can; always the star of the unlikely and rare! It is near impossible to apply any expectations to her recovery post transplant and if she can, she will take the road less travelled! She’s a true warrior, paving her own way and leaving her mark. She doesn’t need to scare us as much but we are proud of her always, blessed and honoured to be her parents.

A week ago I was running on little sleep, no calorie intake and likely only enough water to flush out the caffein that was keeping me going. Abbigail was a mess. I had shared with you the devastation and fears I was facing as I watched her battle what I described as her worst relapse of OMS, something similar to the first days post diagnosis. My heart was in disbelief, but my gut and instinct told me she was ill. Any time Abbigail is nearing any infection, whether a cold, flu or urinary tract infection, I always “know” before any medical signs, symptoms or tests. I always speak as though I too am going through treatment, not to take away from the trauma our girl has experienced, but I feel connected to her in such a way that I feel her pain and truly know her on a level I can’t explain. I knew that despite her fevers, lab tests or vitals, that my daughter was not well. I was reassured over and over, as I rang the nurses bell or paged the doctors to return and exam her, that Abbigail is doing relatively well and that she shows no signs of infection. I was never reassured. I continued to monitor her vitals on my own, take lots of notes and continue to show concern to anyone who walked in our room. There were many long days and nights I feared for Abbigail, that her unique presentation would hinder her transplant recovery and possibly cause her irreparable consequences.

Tuesday morning after rounds, my instincts were confirmed; Abbigail’s virology lab work found she was fighting a dangerous viral infection that could threaten her life. My heart sank…the words mortality are too often spoken about on the transplant unit and when it is in context of your own child it is paralyzing. The “signs” and “symptoms” I was seeing over the past week were confirmed to be a result of her body trying to fight a virus that she didn’t have the ability to fight, hence the severe OMS. I have to explain that the medical professionals did not have grounds for worry because Abbigail did not have any scientific or medical evidence of infection…all she had was Mama’s instincts and knowledge; a three year honorary degree granted through a three year long, 24/7 placement in the field. Although doctors are aware of the rare possibility that because Abbigail has taken high doses of oral steroids twice daily for three years, that she may potentially not produce a “fever” to signal infection, they did not realize that this is what was happening over the last 10 days. Abbigail generally has a cool body temp and so when she hits 36.5-37F I know as her expert that she is likely fighting something. Anyways, she was indeed fighting something, and that something has her at it’s mercy.

Abbigail is at day 18 post transplant. Although every child is different, especially Abbigail, we expected her to have recovered by now, or at the very least begun engrafting to signal that her marrow has accepted the transplanted stem cells and is making it’s own cells. That hasn’t happened yet. So she still does not have the ability to fight any type of infection and remains in BMT isolation.

This virus is now taking over in her stern but frail body, and this week we found out it has infiltrated her organs and is passing through her stool and urine, indicating that it has progressed significantly this week.

She has begun treatment, however this treatment is also a huge risk and danger to her. The drug she is receiving, to help her body manage the virus, is a cytotoxic carcinogenic, which quite simply means it is toxic to her organs and is known to cause cancer. This drug causes kidney damage, resulting in dialysis or transplant and can be the cause of secondary cancers to her. You can probably safely assume that it was not easy hearing that the only treatment to potentially help our daughter fight and live against this virus was also likely to cause further damage and life altering morbidities. We started the treatment, along with the other precautionary medications, and although Abbigail is responding physically, the viral load is still increasing. This treatment will not kill the virus, the hope is that it will tame it enough to allow Abbigail to produce her own fighting cells to kill it off. This could potentially take weeks and months. The virus is killing her cells and the medication to tame the virus is also attacking her cells, making her weaker. Unfortunately, the only natural killer cells that kill this virus are the cells that we purposely eliminated from Abbigail’s immune system last year because they were the main cause of her OMS. Here Abbigail goes again paving her own path! The cells we killed to help her OMS are the cells we now need to save her life.

I have far too much medical information and knowledge about this and could write you a novel, but all you really need to know is that Abbigail needs your prayers. She is fighting hard! Between her resting and raging, crying and the doctors and nurses monitoring her, she still has moments of joy and that I am grateful for. She still shares her smile and screams for her favourite nurses to come sit by her side. She still shines and shares her spunk when she can.

IMG_6836.JPG

IMG_6835.JPG

Halloween was a good day! Although she couldn’t leave her isolation room and participate in the hospital trick or treating events, she managed to lure the candy, treats and tricks to her bedside! She had a blast and when she finally settled and fell asleep she had a well rested night and smiled this morning as she woke!

The road may have gotten longer, darker and curvier, but Abbigail is a force that no one has ever witnessed before. She can beat this!

Thanks again everyone who has been messaging me, commenting on my quick posts and prayer requests. Thanks to so many people, organizations and groups who have been fundraising and donating (www.YouCaring.com/KissesForAbbigail), the burdens are easier to face with some extra help! Thank you to those who brought me snacks and “drinks” and also thanks to everyone who has been cheering Abbigail up daily with the mail they have been sending. Every morning she looks forward to checking her mailbox. Thank you!!!

DAY +2

10 15 2014 14:24 … an other moment in time that I will never forget. The day’s details etched in my brain as it is the day that Abbigail received her stem cell transplant.

I still can not believe it at times. after so many days, months and years of battling beasts far larger than most could imagine, after experiencing pain no child should endure and after so much hope and faith was lost, she received the most anticlimactic but exciting 15 minute infusion! Yup, that’s it; 15 minutes is all it was, after months of preparations with chemos, surgeries conditioning treatments and hospital stays, 15 minutes could have changed her life forever…not to mention saved her life from the trauma of conditioning.

IMG_6284-0.JPG

IMG_6287-0.JPG

IMG_6288.JPG

IMG_6283-0.JPG

IMG_6285-0.JPG

IMG_6286.JPG

Day ZERO itself was an exciting concept for me. I was full of hope, and Abbigail had no understanding of why it was so momentous to me, the nurses and her Transplant doctor. The nurses and I scurried all morning to prepare Abbigail, our belongings and our room. Abbigail’s counts had dropped significantly over night, she went from 7.1 to 0.6, needless to say, she slept through her morning, giving her body some much needed rest while everything around her was about to change. Once she was “sterilized” and our things were too, we moved to our new home; an isolation room prepared for transplant patients that are at a significant risk of life threatening complications due to immunosuppression. she technically had no ability to fight anything in addition to possessing several additional risk factors for complications. This is her bubble, or as her and I now refer to it as, her new Princess tower, like her favourite Princess Rapunzel, being protected from the dangers lurking just outside the door. She has quickly adapted to the changes quite surprisingly actually. She can not leave the room, nor can she have visitors, she can no longer eat foods prepared by anyone but me at the moment or the special meal train for bacteria free diets here, which includes no more take out, fast food or snacks from the cafeteria. She also has to be cautious with any fresh food.

Mentally Abbigail is doing amazing, far beyond our expectations at this point! Physically though, Abbigail is causing a lot of distress to our physicians, specialists, nurses and me!

Day zero, post transplant hour, Abbigail began to show signs of adverse reaction to the preservative used to store her stem cells. Her blood pressure rising and her heart rate plummeting, she kept the Fellow, nurses and me on our toes all night long. Extreme caution was taken, safety measures put in place, boluses, and medication changes and high alert watch until her heart rate and blood pressure started to come within “acceptable” range. By midday on Day +1 we saw improvement however because we still weren’t sure if the danger was gone, we kept her attached to all of the machines for further monitoring and lucky we did because it wasn’t long before her vitals began plummeting the other direction. Despite her alarming vitals, she was otherwise in a great mood considering and she even tolerated some clouning around with A LaBoo the hospital clown and some painting with a Camp Ooch volunteer. She tired easily though and after speaking to the dietician and doctors we had Abbigail begin IV feeding to allow her body to gain some strength to fight! She was attached to more lines, now 6 IVs hanging from her small body, and given lipids and essential nutrients to compensate for her lack of eating. Once she fell asleep, her heart rate steadily rising and her blood pressure continued dropping alarmingly low, and so she was again on high alert, vitals every 10 minutes, no sleep and people coming in and out of her room the entire night.

IMG_6281.JPG

IMG_6282.JPG

I remember just giving birth to my kids, didn’t matter if it was William, my first born or Madden, our third baby, I distinctly remember not sleeping that first night they were born because I was watching their chest rise and fall as they breath because I was fearful they would stop breathing in their sleep. I think all moms can relate. Most would also agree that although the worry never goes away, you find yourself at some point not checking as much as we realise they are ok. Well last night I watched, I felt and prayed her cheat would continue to rise and fall again and again and again. This morning we called the intensive care unit team to assess abbigail and be sure we are doing everything we can for her right now to keep her safe. Our fear is that these alarming heart rate and blood pressure changes could be caused by an infection and so we’ve put her on 5 aggressive antibiotics, antivirals and antifungals to be profalactic with any possible infection.

She’s currently trying to rest as I type, she is uncomfortable with all of the wires, feeding tube, monitors and electrodes attached to her body and skin and we’ve had to start her on a form of morphine to alleviate some pain associate with mucusitis; which is the breaking down of cells within her GI tract causing painful sores to develop from top to bottom.

I am praying for a comfortable night for my sweet girl, I am holding onto faith that the next moments will be easier than the last. I hope that her team of doctors, and their are many now, can locate the source of possible infection and give us answers and a course of action quickly. She is at the mercy of far too many variables right now and although she remains stable this hour, I’ve seen how quickly things change when these kids, these babies are so weak.

Thank you to everyone once again for your kind words of support and encouragement, for your prayers and for the many donations that have come in this week. These all make the burdens that much easier to bare. Thank you for sharing her updates and YouCaring page.

If you wish to help directly too, you can click on Abbigail’s {Fundraising} page here for details on the many ways you can help or contribute!

This is only the beginning

How did the hours turn to days? How did our vibrant little girl get so lost…so quickly. Her moments of joy are becoming shorter and fewer. Her smiles not so radiant and her laughter just a little quieter. She utters only groans and whimpers of pains, exhaustion and discomfort.

We started this path towards her miracle on August 19th with 4 days of some pretty awful and intense chemotherapy to prepare her body for stem cell collection. That cycle of treatment took only a few days to start the feared attack on her cells, healthy or not. We saw her hair quickly fall out within a matter of days, she became neutropenic, febrile and consumed with numerous bacterial and viral infections and she lost a few of her beautiful pounds. We spent more than half of the last month hospitalized, in isolation, far from home and away from the boys. This is only the beginning…

Last week after being discharged from SickKids and CHEO, we travelled back and forth daily for several preparatory appointments and procedures to ensure that Abbigail’s organs, body and system are well enough to withstand the next steps towards that miracle on this journey. After an exhausting week, dozens of pokes, blood draws, nurse injections, scans, office visits and more, Abbigail and family celebrated birthdays and spent some amazing quality time just being together.

Tomorrow there are several critical appointments to be had, one will be surgery to remove her port and replace it with a central venous line which will be used during chemo, transplant and post treatments. This type of line will be a huge change for Abbigail and likely a source of discomfort, frustration and even pain in the coming weeks as she adjusts. She must endure so much…

So the journey continues, with hopes of better days, or fewer difficult ones. Abbigail is stubborn and let’s very little control her. Tomorrow she will awake from surgery and I will hold her and remind her of her beauty, strength and the bright pink body she will then have (sterile cleaner dye) in hopes of catching my breath and maybe even seeing a glimpse of our firecracker’s spirit and that contagious smile before the days turn into months.