When you ask “How is she doing” (Day 53)

Being home, back from transplant and her last chance at a “normal” life, has been both a blessing and a challenge.

The last few weeks we have experienced extreme joy and gratitude as a family; being together again, under the same roof in time for the holidays, and all of the festivities that come with this time of year. Abbigail has been slowly recovering from her transplant with very few complications and she has been regaining strength in her muscles, walking, “running” and even doing the stairs again. She isn’t showing any further signs of dangerous infections and she has been responding well to her new medications. It is only a few weeks to Christmas and there are no signs that lead us to believe she will be having Christmas in the hospital this year!!! She’s slept in her own bed now for 18 nights, she’s been able to stop taking the dangerously renal toxic antivirals, her CVL has continued to work, with at home maintenance, and she no longer cries for her brother’s in sadness. Abbigail saw her Princess friends at the mall last week, she also visited with Santa and shared with him her Christmas wishes, and she even shopped for her brothers. She has done so well, come so so far and been able to do so much since being home. We are so grateful for all of these tiny miracles in her life.

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Our bright and bubbly four year old girl is still lost within herself. There isn’t often an hour that passes in her day that she doesn’t spend screaming, crying, hurting or fighting with herself or us. Almost any activity, outing or event attempted, with her alone or as a family, is interrupted or abruptly brought to an end, in order to calm her or distract her from her own obsessions and thoughts. During her moments of play with her brothers, as we decorated our Christmas tree and have family meals, Abbigail is followed by a tall, heavy and cold IV pole; which holds her feeding pump. She still requires 24 hour NG feeds; which is fed through a tube inserted into her nose and through to her stomach. Since her conditioning chemo began, the first week of October, Abbigail has not eaten more than a couple hundred calories on a good day, so she continues to painfully have her NG tube replaced every few weeks to ensure she is nourished enough for her body to recover. When Abbigail asks for food, of any kind (only those bacteria free of course) you can be sure we do whatever means necessary to accommodate and promote her eating by mouth again, even if that means leaving the table, shortening an activity or changing our plans completely. Being able to leave the house is not easy; ensuring we have all of her central line emergency supplies, double checking we have the hand sanitizer and wipes and if we plan on being out longer than an hour we must bring her feeding supplies too, including syringes, adapters, sterile water, formula and pump. Our girl loves to shop and it brings her joy to hold a toonie and pay the “deedee” (cashier) but you will have to look through her mask to see her smile since anytime she leaves the house she is required to protect herself from germs with a mask in addition to the hand cleaning. You also won’t find Abbigail in crowds or shopping during peak times. I had to contact the princess company and have alternate arrangements made for her to meet the princesses briefly last weekend at the back entrance of the mall an hour before the crowd was to arrive to see them introduce Santa, then we raced the kids over to the other end of town to see Santa without the crowds. Abbigail still fights each and everyday for her miracle…she struggles through most hours,in one way or an other. At home we are getting through the days, trying not to think of her reality every waking moment. Come time to speak to the doctors, Abbigail is consumed by her friends company or Molly the Clown’s loving laughs and entertainment. If only I could ignore the reality. Her liver engines continue to climb, her kidney function remains fragile and at risk and her immune function is still compromised. All side effects of lethal chemotherapies and years and years of dangerous medications originally designed for either adults or other diseases.

Abbigail has made progress with her physical recovery; her marrow is producing cells again, although not yet functioning, we have no reason to believe they won’t be in time and her physical OMS symptoms have been improving and some even disappearing. Her hair started to grow back again but the bald appearance and mistakes that she is a boy still stand out as a reminder of her pain endured and struggles to come.

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The next time you see us or Abbigail, know that the answer to your question “how is she” isn’t as easy to answer as you may think. Although the most important thing is she is home with us, there is so much more that can not be explained with words. This road is still winding and unfortunately we do not have an end in sight yet, so please understand that when I say it is complicated or brush it off, that I am not being short, but rather emotional and heartbroken. Almost three years ago we were told she had cancer and OMS but that she was among the “lucky” ones and should be back to normal living before the year was up. Here we are today still on constant alert, administering dozens of medications every 6 hours and still calling CHEO our home. I have a hard time considering that she was “a lucky one.” My heart is aching daily for our constant complicated struggles as a family and for our daughter’s endless pain and suffering, but I am grateful for the hugs each night, the screams for mummy and the love we share as we celebrate Christmas in our new normal way.

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 +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.

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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.

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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.

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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!

DAY -2 … Thanksgiving Blessings

Abbigail has been completely wiped out by this cycle of conditioning chemotherapies. Her skin is pale, her eyes are sunken and swollen, she has almost stopped eating altogether and has begun to lose weight already. She looks, and is, weak and frail. She’s simply not the child that I took into hospital in search of a miracle, just two and a half weeks ago. Being honest I’m surprised by how hard she’s been hit already considering her toughest treatment day is today and her post-transplant days are still ahead. I’ve spoken to other parents, I’ve read about other children, but still I expected things to be different I guess, more like her past treatments perhaps.

I find it hard to think that we have chosen to do this to her. I look back a mere few weeks ago to our little feisty firecracker wrestling her brothers, believing she will start kindergarten at her big brother’s school, and I contrast to these past few days, where Abbigail has scarcely been able to muster enough strength to speak at times and is confined to her wheelchair if I am able to get her out of bed for a short stroll down the hall to breathe. All behaviours and characteristics unseen for the Abbigail we all know and love. Nonetheless, this was a choice we, as her parents made. We chose to put her through these pains, to allow doctors and nurses to do these procedures and administer these drugs to our daughter. Her own mother and father are responsible. You cant imagine how much that realization hurts, how much doubt, fear and anger this causes to a parent. We have been so blessed that her cancer hasn’t yet warranted this traumatic treatment or that doctors did not prescribe it, however that blessing places the onus and burden upon us. We read all of the books, reviewed all of the statistics and know all of the facts; all of the cautions are etched in my brain, yet here we are. Stem cell transplant is a traumatic, immune altering, possibly a fatal procedure that reset’s the body’s immune system. Lethal doses of chemotherapy and immunosuppressant combinations are given to condition the marrow and obliterate the immune system entirely. Leaving our baby girl completely vulnerable to infection and at the mercy of her environment. She requires dozens of drugs, medications and antifungals, antivirals and antibiotics almost hourly, in addition to the daily blood and platelet transfusions to sustain her until the life saving stem cells are transplanted and engrafted within her marrow and able to produce her own immune cells once again. So if the decision was ours to subject our daughter to these high risks of morbidity and mortality, than why are we?!? The very question that haunted us and will likely always haunt us until the day we get our daughter back and her suffering is a thing of the past. OMS is incurable, it is debilitating and has robbed our precious girl of her laughter, love for life and quite simply, her quality of life. Every day she takes almost a dozen medications, some with very debilitating long term side effects of their own. Her days are often spent in a battle with herself; hurting herself and others, rage attacks over insignificant things and screaming and crying uncontrollably for hours sometimes. With each infection, fever, cough or sniffle, Abbigail experiences setbacks in her OMS progress. Her mobility is compromised, her motor skills suffer and she faces yet an other relapse that often puts her two feet further back in her progress. We couldn’t sit back and watch her suffer through these battles anymore. We couldn’t imagine her living a life this way, losing her spirit more each day, wondering when it would strike again and robbed her of her mobility, or worse, have that mobility threatened by the treatments she undergoes daily, simply to keep her brain safe from her own immune system’s attacks. Was there really a choice?

As tough as these few days have been and will be over the next month, despite the statistics and facts, Abbigail is a blessing, just as our two boys are and we are grateful for so much this Thanksgiving! We have each other, we have loving and supportive family, we have a new baby cousin who was just born, a niece on the way, and support near and far from our community, friends and strangers. We are forever indebted to all of you and we thank you today and always.

Happy Thanksgiving and thank you for always keeping Abbigail in your hearts, thoughts and prayers.

https://www.youcaring.com/fundraiser-widget.aspx?frid=211166

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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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Walls, Frustrations & Fears

We are so blessed; so thankful for all of your support, prayers, kind words and generosity!!!

http://www.youcaring.com/medical-fundraiser/relief-for-abbigail-s-brave-journey-through-cancer-oms/211166/update/222890

This part of our journey is proving harder emotionally and financially than I could have ever imagined…it’s only the beginning.

Barely even a week has gone by here in Toronto and already Abbigail has been through so much…too much. Upon admission, her UTI was discovered to be resistant to her current antibiotics, a change was made to her meds but that didn’t change the fact that her OMS was already running rampage in her body and to her brain. She was experiencing coordination and balance challenges as well as ataxia. These symptoms were somewhat alleviated as the days passed on IV antibiotics and Abbigail was able to play with her new friend and fellow transplant buddy! On top of her OMS, Abbigail’s CVL (implanted line for IV) was not working and had to be x-rayed before fate decided she required a new line and it was pulled out during a fall on our routine morning walk through the halls.

On top of these issues, we were told we were being discharged to Ronald McDonald with oral antibiotics until her UTI is dealt with. Sounds great right!?! Not really. This means that Abbigail has just “forfeited” her transplant spot at SickKids, the very place where the one and only phisician who accepted Abbigail’s case practices. For Abbigail this could be life altering. We have not only uprooted and made huge changes to our family’s life, but Abbigail has no more options. This is experimental however it is all we’ve got and Matthew and I pushed through and fought long and hard to find someone who would help us! Now we may lose this opportunity right now. This is a tough thing to swallow after all that she has been through and all that she will face if she does not get this chance.

I am trying to enjoy this time alone with Abbigail, make her happy and do things she loves while we can but we both miss Matthew and the boys and our family and I have a hard time not running scenarios through my mind constantly as we walk past all of the cancer hospitals, research bulletins and buildings downtown.
Today we had special visitors from home; her oncologist and interlink nurse paid us a visit at Ronald McDonald. This visit may have been short but it meant the world to me and Abbigail enjoyed the familiar faces! Thank you ❤️

We have some appointments scheduled this week and hope to hear from her doctor tomorrow regarding surgery, but in the meantime we will keep our blessings in sight and focus on them.

Please help me pray. Please help me beg! Our baby girl needs this and she needs this now.

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