Archive for 2010

The Waiting Game

Wednesday, December 29th, 2010

We have been back on 8B for well over a week and have not seen any significant change in Gavin’s oxygen requirements. We are trying not to rush him. Patience, grasshopper. He wears his prongs without complaint and only needs a minimal amount, but just can’t get over that last hurdle. (more…)

Christmas Eve

Friday, December 24th, 2010

Tomorrow is Christmas. Although the day won’t be exactly as we imagined, we hope to take Gavin off the floor with a portable oxygen tank and have a quiet meal and presents with Bubby and Da, Uncle Duncle, Auntie Loz and Uncle Adam. I have not purchased any gifts this year, apart from a few things for Bean, but I’m sure my family forgives me. Actually, staying away from the shops altogether has been a refreshing change for this year.

I’m not sure if Gavin will be up to eating anything tomorrow, in contrast to last Christmas when he single-handedly ate the cheese platter. I hope he’ll be willing to try something, but am accepting that we are still moving slowly in the eating department. He has only been off TPN for a little over a week.

I am not sure if I will be up for eating anything either, as I’ve spent the last 24 hours down for the count from a mysterious stomach bug. (Bubby is stricken too) I can only hope that Bean has not contracted it too, as I became ill on my night at hospital and could not leave until Craig arrived the next day. I knew that Craig had been out the night before and feared Gav would have two incapacitated parents on hand, so I made a 911 call to Da who came to save the day and occupy Bean while I moaned on the couch. After Craig arrived, I vaguely remember clutching Lauren’s arm and shuffling over to her house in my pyjamas, and then collapsing on the couch asleep. From there I was transported to Bubby and Da’s house where I passed out again for 12 hours. I think I’m feeling better now. I do feel that the timing of this illness could have been a bit better.

But of course it all serves to remind me to be thankful for my health, and my family’s health, and my Bean’s health. We should all remember, as we eye the present-mountain under the tree, that while it is lovely to have new things, you cannot wrap or box the loveliest things in life. I don’t need to tell you what those are.

Space!

Wednesday, December 22nd, 2010

Gavin has been making many little moves over the last couple of days. Yesterday afternoon I popped out with Da and Uncle Duncle to pick out some toys for Beanie’s x-mas gifts, and when I returned I found him decked out in a pair of prongs. We are delirious to say goodbye to the mask.

These are the oxygen mask issues:
1. They do not stock toddler-sized masks, so his didn’t fit.
2. Because it didn’t fit, it slipped into his eyes a lot, or just off his face while sleeping.
3. It is incredibly noisy, and the less oxygen needed, the noisier it gets. Having a conversation in the room became difficult, and hearing Gavin’s little voice over the roar nearly impossible.
4. Water gathers in the tube and adds its own special noise to the cacophony, and then needs to be emptied.
5. Sometimes the water spills out of the tube when Gavin rolled over, soaking him and the bed as he slept.
6. The parent attempting to sleep in the room would have to wake up every ten minutes to adjust the mask, empty the tube, change the sheets or call the nurse.

Prongs are silent. Prongs stay quietly attached to a Bean’s head. Gavin’s sats as he sleeps tonight are a rock-solid 99. I am hoping that over the next few days the need for the prongs will decrease too.

In other news, we were switched from an isolation room to a much larger “step-down” room. We can spread out a bit and no longer have to endure the whirring of the sliding glass door opening and closing all night. Craig and I took all of the stuff over while Gavin was colouring with Bubby. Suddenly he got panicky and said, “Where my toys go?” Of course we assured him that his toys were waiting for him in our new and improved room, with ensuite. Gavin was thrilled with the new space and has been having a lot of fun.

In celebrity sightings, Drake popped by for a visit today. I heard some sort of commotion outside and our nurse told me he’d come to visit one of the other brain tumour patients, a thirteen-year old girl. Apparently she kept talking about Justin Bieber, so he pulled out his phone and called Bieber for her to have a chat with him. I am a closeted Drake fan (I know, I’m not exactly in his target demographic.) so of course had to poke my head out the door to have a look too. The unit was abuzz for the next couple of hours. I know I’m probably naive about how PR works but I still think it was a lovely thing for him to do. However, Bubby will complain about the fact that they let some famous dude and his handlers wander all over the bloody place but Gavin’s Da and Auntie Loz can’t come in!

We Hope We Never See You Again

Monday, December 20th, 2010

6 months ago today we came to Sick Kids on a Sunday night and found out that Gavin had a brain tumour. It has been a long, long journey since D-Day. We have experienced incredible highs, like Bean’s very successful brain surgery, and plummeting lows, like our last 13 days in the ICU.

After his tumour resection surgery, we spent two days in the ICU, and as we left, the team saw us off saying, We hope we never see you again.

Unfortunately, that was not the case and we had to return for this extended stay. Today again, though, we say, We hope we never see you again. We now find ourselves back in our old room on 8B, with Gavin thrilled to see all his pictures and toys. We’ve already played garage and puzzles and are now relaxing with a DVD.

I never wanted him to have to make that trip downstairs, but I am forever thankful for what they were able to do there. When things seemed the most dark, they were able to stabilize Gavin again and again, using techniques and machines that I had never known existed. I am so thankful for his recovery. I am so thankful for the existence of the oscillator. I am indebted to the doctors and nurses and respiratory therapists of the ICU who got us here, still in hospital but back on the unit.

The next few weeks will be about recovery. Gavin is still in delicate shape but is beginning to be back to his old self. He has been playful today but needs to be watched carefully to be sure he doesn’t over-exert himself. We will wean him off morphine over the next couple of days, and begin to increase his formula to get his weight back up. I hope that his oxygen needs will decrease as well. The plan is to continue treatment with steroids and platelets to reduce the inflammation and continue his lung repair.

He is talking more and more but still not making sentences as complex as those from before, as speaking is still an effort. His throat is most likely very hoarse after 13 days of intubation.

We will be spending Christmas on 8B this year, but that is fine with us. It will be a subdued holiday, but we have already received all the gifts that we need: a clear scan, repairing lungs, and the end of active treatment.

Many, many heartfelt thanks to all of those who have been with us day after day through this. Your messages, cards, packages and food deliveries have helped us more than you can know.

Extubation

Sunday, December 19th, 2010

Today Gavin was taken off the ventilator and is back to an oxygen mask again. I was out of the room for the actual extubation but it went smoothly and he has been breathing well on his own since about 1:00, but still requires 50% oxygen.

When I came in he struggled to say his first words in 13 days. His voice is scratchy, rusty, and oddly high after being intubated for so long. Hearing him say a few little words brought tears to my eyes. I hadn’t realized before how difficult it is to communicate with someone who can’t speak. It is especially difficult because obviously he can’t yet write and so kept trying to talk. Heart-breaking.

He slept much of the afternoon but was quite active in the morning and early evening. He wanted to read books and play with a fun sticker/numbers book a friend sent us. He really focussed on it for at least an hour.

He tires easily of course, and has not had much to eat for a couple
of days. I can’t project how long his recovery time will be or how long it will take for us to get out of here but I imagine it will be several weeks. He is so thin and weak and shaky right now, and seems to have lost some of his sparkle.

But. There is talk of moving us back to our old room tomorrow. Hurrah! If not tomorrow then perhaps the next day.

Crystal

Friday, December 17th, 2010

The first results are in and the scan is clear, clear, clear. There is no sign of tumour, there is no sign of anything that would cause a seizure, and there is no tumour in his spine. Of course, these are the initial results, the official report will not be until next week, but I think we’re in a good place.

We are so tired and emotionally drained from the last four weeks that we can’t even be elated. Both Craig and I are just quietly thrilled. Our world continues the way it is meant to be.

Now I implore the universe to fix Gavin’s lungs. Please fix my baby’s lungs, and bring him some happiness tomorrow.

MRI

Friday, December 17th, 2010

We are waiting for our Christmas present this year. Gavin is in MRI as I write and we are waiting for the news that the scan is clear, no sign of tumour growth, no problems in Gavin’s brain.

Today has not been without difficulty. Despite my resolution to stay positive and think no negative thoughts, it is hard to prevent them from creeping in when you start the day with 24 electrodes attached to your son’s head. Last night our nurse saw Gavin do something strange in his sleep, moving his lips, twitching his shoulder, etc. and decided that he’d had a seizure. I tried to tell her that this has not been unusual for Gavin since he began chemo. I also tried to explain that he had an EEG in the past and had been seen by neurology and declared “normal.” She was pretty convinced that she’d seen a seizure though and reported it as such. I suppose it is her job to report things as she sees it, but it has made my day very difficult.

Anyone who has undergone brain surgery is more susceptible to seizures because of scarring in the brain. I have researched this in detail because I spent many, many sleepless nights in the summer worrying that Gavin would have to add epilepsy to his list of challenges. As many people have told me, it’s not the end of the world. Yet add that to the other difficulties he faces and these things begin to add up. This morning I was very unhappy to learn that Gavin would undergo an EEG and CT scan to follow up on the seizure activity. Craig and I decided to suggest to the team that they do an MRI rather than CT as he is due for his quarterly scan anyway. Everyone agreed with that suggestion, thankfully.

I felt very anxious and upset that I had to worry about this on top of everything else. In terms of his other conditions, he is doing quite well but not making very fast progress with his lungs. There was talk of extubating him tomorrow but now I don’t think that will
happen. In good news though, he had his chest tube removed yesterday and is beginning to heal from his surgery. He has also had his femoral line, peripheral IV and catheter removed. We are still working on ART line and respiratory tube, obviously.

He is now more awake and has his eyes open for much of the day, although he is still on morphine so is quite spacy and subdued. He is certainly not my active little guy right now and that is hard to see. He is sad and doesn’t smile much. Yesterday I brought in a present from a friend and he got excited to open it, so at least he was interested in something! It was a Thomas the Tank Engine from our friends Rose and Jordan, a much-beloved toy of Jordan’s which I’m sure will bring us luck. Gavin held it in his hand for much of the day. Today he mostly wanted to watch DVDs, but consented to read books for a little while too. We are having a hard time communicating because it’s difficult for him to understand that when he talks, no sound comes out. We are trying for thumbs up or squeezing hands but he’s having a hard time with the concept.

The results of the EEG are in and show no sign of seizure activity. The EEG was done while Gavin slept and he was very twitchy the whole time so it was a good time to do it! Of course, this is not the
final report, but is good news for now.

We hope to get the results of the MRI tomorrow, so I will certainly let you know what happens.

I’m offering thanks today to Gloria, for coming to do reiki in the ICU, she is a selfless person. I also need to thank the beautiful mamas of my mother’s group for bringing meals every day for the last many days. They are wonderful! My most special thanks though, go to Shawna for delivering meals day after day with no thought to her own agenda. She is an incredible chef who has concocted beautiful soup, juices, salads and veggies, each with a warm note that brings a smile.

I know you are praying with us, I know Gavin is going to be fine. Keep sending your love and best intentions. That more than anything will get us out of the ICU.

Progress

Wednesday, December 15th, 2010

I will say this with the utmost conviction: Today has been a good day.

This morning Gavin was switched over once again from the conventional ventilator to CPAP settings. This means that he is still intubated but breathing on his own with the help of pressurized oxygen. This is similar to the support people with sleep apnea need. This is a huge step in the right direction, and our support team here are thrilled.

Of course, there remains the mystery of what is actually going on in Gavin’s lungs. We know that there is some sort of bleeding happening deep in the lungs. Last night the staff doctor ran a bronchoscope in again to have a look, and discovered nothing. Today all the teams met to discuss Gavin’s case, and to our great relief came to the conclusion that Entanercept is no longer in consideration. We were justifiably frightened about loading his system with an immune-suppressant when his own immune system is such a fledgling. Of course, we are being told that this might still be an option, but we are not considering it. We are instead choosing to focus on Gavin’s healing and his innate ability to get better.

My mental shift today has made me almost cheerful. I feel so certain of Gavin and know that he has rounded the corner.

Gavin is still heavily supported, and there is still the issue of bleeding in his lungs. The team made the wise decision to prop up his weakened immune system with twice daily platelet transfusions. I feel that this more than anything can kickstart his body into recovery mode and stop the bleeding once and for all.

The doctors put in a special request with blood services for Gavin to have these platelets. Under normal circumstances, they would not appreciate so many going to just one patient, when there are chronic shortages for all blood products. I, as a life-long wimp, have never once given blood. I have cited squeamishness and slight anemia as my reasons not to. Now I know the power of this gift. It is truly the gift of life.

Very soon, within the next couple of days, I plan on becoming a blood donor for the first time. In recognition of the many dozens of transfusions Gavin has received from these selfless strangers, I am also asking all of you to think about doing the same. You will never meet the person that your blood goes to, and will never know the impact it makes on them. Perhaps it will be a child with cancer, like Gavin, perhaps a young woman in childbirth, perhaps a grandfather in a horrible car accident. No matter what the circumstances, you can know that it means the difference between life and death.

Okay, Canadian Blood Services, I’ve done my bit for you today.

Gavin is sleeping peacefully, it will be a quiet night.

Thankful

Wednesday, December 15th, 2010

We had plummeted to such a low point over the last couple of days. It was hard to see the good in anything and even harder to muster the courage and positivity that is required here on a daily basis. But with every message from one of you we find that strength again, get up and keep moving. We continue to believe in Gavin. I had to have a stern talking-to with myself the other day because I was tearful and broken, sitting in Gavin’s room and emanating bad vibes. I stepped out for a bit and gave myself a shake. I need to recognize when I’m not helping.

We have been told many bad things by various teams since the start of our journey, but despite all of the warnings, Gavin has risen above it all and kept on fighting. Now we need to hear what the doctors have to say, and simply choose not to believe it. Gavin is showing us through many little steps that he has the power to recover. He needs us, and all of you in the world to keep believing in him.

A friend of a friend of a friend sent me a message yesterday with this prayer she had written for a loved one and repurposed for Gavin. It is a good reminder of how I need to be mentally:

Thank you for my sweet little Gavin
He is the greatest gift and blessing anyone could ever wish for
Thank you God for Gavin’s health
Thank you for Gavin’s strength
Thank you for Gavin’s recovery
Thank you for the progress we have seen so far

Thank you for the great care he is receiving at this hospital
We are so grateful to live in a country that provides my Gavin with the best possible healthcare
Thank you for the nurses
Thank you for the doctors
Thank you for this medical technology
Thank you for our families for their support
Thank you for our friends for their support
We are so blessed in every way
Gavin is so blessed in every way
Gavin is so lucky to be surrounded with so much love and support
Gavin deserves only the best, because he is the best son anyone could ever have

Thank you for giving us the strength to support him
Thank you for keeping us strong and healthy
Thank you for reminding us to feed ourselves, sleep and breathe, because by taking care of ourselves, we can be strong enough to take care of Gavin who counts on us to be healthy and strong

Thank you for keeping us optimistic
We do not let any negative thoughts into our minds (no matter what others say to us)
We no longer speak of his symptoms and setbacks, we only speak of his recovery and progress
We no longer think about his symptoms and setbacks, we only think of his recovery and progress
I will only discuss his progress from now on
We focus our attention on every bit of progress we see and we give abundant gratitude for it because we know he will get better each day
Our minds are only filled with confidence, love and gratitude for his health
Our hearts are only filled with confidence, love and gratitude for his health
Our words only speak with confidence, love and gratitude for his health
We have to be optimistic and confident to support him and that’s exactly what we’ll be
Thank you helping us forget our worries and fears because we know that negative energy doesn’t serve him
Thank you for helping us be happy and upbeat in his presence because we know that our positive energy can work miracles
Thank you for helping us laugh and be loving in his presence because we know that’s what he needs the most
We believe with every fibre of our being that Gavin will be restored to his healthy state
Because we know ANYTHING is possible with LOVE and FAITH

—–

Thanks for being strong Gavin
We know you’ll be okay
We love you Gavin
And we’re here for you every step of the way

Many thanks to you Linda, I needed that message!

To all our family, friends and beautiful strangers in the world, much love to all of you. We are so thankful.

Hard day’s night

Monday, December 13th, 2010

We’ve shed more tears today. More than yesterday, more than Diagnosis Day. Gavin went back on the oscillator around 1am this morning.

It is excruciatingly heart-wrenching to be so close to being free of ventilators only to go all the way back to where we were after the biopsy.

Gav has not been muscle relaxed (pharmaceutically paralysed) like he was last time on the oscillator so he has been able to express his frustration more. The breathing tube is below his vocal chords so he can’t make sounds and there’s nothing more distressing than seeing your child silently cry.

The hardest part of today was the discussion we had with his doctors when they told us that if he doesn’t improve in the next few days that they want to try Etanercept. The drug is extremely risky with a low success rate, but it may be our only shot.

We need the steroids to work. They must.

We all have to believe in our little warrior and his invincibility. He’s going to stand up and fight for his lungs and prove all the doctors wrong once again.