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.

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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.

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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.

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

DAY -5

There are days I have to tell myself “get through the next five minutes, you can make it through five minutes,” and I did! I have been making it through years of our daughter’s cancer and OMS relapses and treatments…five minutes at a time.

Last night Abbigail and I said farewell to some families we have met and bonded with while staying at the Ronald McDonald House here in Toronto as we walked over to the hospital for her admission. We also had to kiss our family goodbye. Matthew, Nana and our two boys came for a visit this week and it was so great to be together again after two long weeks. As grateful as I am that we had those days with family, last night was quiet, lonely and sad without the commotion, noise and laughter of Abbigail playing with her brothers. Last night was also an anxious night as I sat staring at my girl as she slept peacefully beside me. Today is DAY -5 and that marks the beginning of conditioning treatments preceding the actual transplant of her stem cells.

Abbigail has a way of always making the best of every situation, her innocence hasn’t been completely robbed if her. Her heart is so big and beautiful, it shows on her face as she proudly makes her own thanksgiving apple pie in one of the children’s lounges today. I faithfully pray that these moments of pure joy and innocence continue to shine through the difficult times that lay ahead.

As I type, Abbigail sleeps through the first poisonous dose of chemotherapy, part of her pre-transplant conditioning. When she wakes up, she will likely be sick, miserable and I will have to tell her that an other fight has begun.

Up until now, despite being here for over two weeks now, she hasn’t had to remember the chemos, the pains, the nausea and vommitting. She has enjoyed making new friends and having tea parties with the occasional surgery, ultrasound and poke or procedure. She will quickly and sadly be reminded of her reality when she awakes, possibly ill and they forcibly insert an NG tube, hoping not to induce further throwing up. At that moment I will have made it through the last five minutes and I will move on to the next five…perhaps with a little less energy but never any less love or faith.

Tomorrow will be DAY -4; she will receive more chemo and it should be an uneventful day with only one chemo treatment. Sunday however promises to be difficult as she receives a very powerful immunosuppressant, much like chemo but somehow not as poisonous.

Pray for an other five minutes…that Abbigail too can get through them.

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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.

Abbigail’s New Beginning and Brave Journey to Healing

Last week Abbigail went through more scans and procedures, including a bone biopsy to quantify the recent findings by radiology that suggested further metastasis to her pelvis marrow.

The pathology of this biopsy came back after a painstakingly 7 days of waiting and they believe that there is no evidence of disease within the samples they tested. Her bone marrow aspirates and trephines clear, MIBG showed no uptake, however her bone scan showed abnormal uptake and her MRI clearly shows abnormalities within the questionable area. You might say it’s good news about the biopsy, but I still can’t bring myself to equate questionable evidence of disease, within a body already known to show new disease, which is what it almost always is (even though we keep being told that it might not be), with good news. So instead I think of it as not bad news. I was hoping for not bad news, and it wasn’t bad news. So in that sense you could even say it was good. I can’t help but wonder and worry while I am trying to be grateful because it was clearly stated by radiology that he could not be truly confident in that he retrieved the biopsy samples from the area in question. It was also clearly defined in the pathology report that within the 5 samples studied, only 20% was bone matter and that leaves me nervous and anxious that we are celebrating something irrelevant, but I will chose faith and hope today and chose to be leave that this disease will no longer inhabit my precious girl’s body.

The fact remains though, that this new activity found within her pelvis on several radiological and nuclear scans could potentially affect her eligibility for transplant, never mind what that actually means to have new inoperable lesions in her tiny body. So with hope in our hearts we will push through the next steps in healing and chose only to worry if just cause is presented. We are hoping to have new imaging done in a few weeks, before actual ablation and transplant, to see if the area in question has changed.

After Abbigail’s biopsy, Matthew and I took a quick trip to Toronto to meet with her new Bone Marrow Transplant doctor from SickKids hospital in hopes of securing a date in the immanent future to begin the transplant process and get her chemo underway. This hopeful procedure will bring us to Toronto for numerous months, away from family, friends, work and the comfort of our own home and CHEO, however it may bring us hope, and a new life we never thought possible again!

Although transplant hasn’t yet been scheduled (day 0) for various logistical reasons and due to the complicated case Abbigail is, we have started the lengthy process leading up to Day 0; Abbigail’s New Beginning and Brave Journey to Healing! Monday we will check into the Ronald McDonald House in Ottawa for a quiet family night together before Abbigail is admitted to CHEO the next morning to begin a week of chemotherapy. I will stay there with her as always, hold her when she’s too weak to sit up and carry her when she can’t walk. I will cuddle her and rub her belly when she’s throwing up and nauseous. There’s nothing I wouldn’t do to take her place through these difficult days of treatment; to take away her bone pain from the stem cell stimulants, the nausea from the poisonous life saving treatment, and so many more of the acute and long term side effects she will experience over the next weeks, next months and for many years after.

Abbigail is a firecracker, and she continues to battle through it all with joy, love and bravery. We can’t help but follow her lead. She has grown up so much over the last two and a half years and we look forward to watching her continue to grow and become the girl we always knew she was!

As we travel for treatment, spend countless months away from home, and hold Abbigail’s hand through the most difficult months of her life, please follow for frequent updates as each day will have the potential to change her life. Stem Cell Transplant was not a quick and light decision, it has been over a year to get here. You see, Abbigail will be the second child to go through a transplant of this type for OMS in Canada and third in North America and it currently represents a 50/50 chance for her remission. Her protocol has been carefully mapped out with chemos, steroids, immunosuppressants and numerous immune altering drugs specifically to target OMS and has also been tweaked further to target Abbigail’s stubborn and rare neuroblastoma presentation as an OMS child. Stem Cell Transplant has the potential to be life saving but still holds significant risks for morbidity in many cases and even mortality in as high as 5% of children. This was by far the toughest decision we’ve made to date and although we know there is no cure for OMS, and it could return several times within her lifetime, we have high hopes that this finally treatment will bring her to a better quality of life and allow her to experience more as any other child would.

Your support and prayers are appreciated and truly make a hard day or long night slightly more bearable knowing we are not alone throughout this journey. Thank you from the bottom of our hearts.

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