Much anticipated update from Cynthia

One down ….

From Friday March 14th 2008

Tuesday was Harry’s last day of his first round of chemotherapy. We are very happy to report that the doctors are very pleased with how well he responded to this first round. He handled the first two days very well and mostly slept through the third and fourth days (Sunday and Monday). The doctors were a bit concerned with just how sleepy he was – but he was positively responding to stimulus. We believe he is just a smart little boy who knew that the best thing to do was to sleep and give his body all the energy it needed to let the chemo start doing its work.

By Monday evening he was perking up a bit and much more awake, which pleased his oncologist. He made it through the five days of chemo with very little nausea. He was more nauseous in the following days, or evenings actually and was sick a few times in the day Tuesday and then in the night Tuesday and Wednesday nights. He was given additional anti-nausea medication, which seemed to help. Last night (Thursday night) he was only sick once at about 6:00 am (and really stayed awake from then on, hence my early morning). So all in all he has done a great job keeping he feedings down, which will help minimize his weight loss.

Another aspect of his care that has gone really was has been his fluid management. By last weekend he had gained about 5 lbs of fluid, which was quite concerning (and significant when you only weigh 19lbs in the first place – he’d gone up to 23 lbs at one point). His little legs were very swollen, as was his belly, which was causing pressure on his lungs and making it hard for him to breathe (hence the need for oxygen). The nephrology team was monitoring him very closely and doing a wonderful job on fluid management. His belly has decreased at least 6 cm and his weight is now about 18.5 lbs. The challenge now is to keep fluids down and to increase the calorie content of his feeds to stabilize his weight. However, the oncologists are very happy with how well he responded to the fluid management and where his weight is now. His arms and legs are looking thinner now than we when went to the hospital – but that is why it was good he started out the treatment so chubby.

All in all the doctors are very happy with how well he has responded to this first round of chemotherapy. We have several positive results as well to indicate that the chemo is indeed starting to work on his tumour already.

His biliruben count (related to jaundice) has come way down, almost to the normal range, and he is no longer jaundiced. This is really good, because it means he will be able to do the different set of chemo drugs for his second round (sort of like hitting the tumors with a one-two punch).

Also his blood counts are falling – which they are supposed to do if the chemo is doing its job. It is nerve-wracking to see his white blood cell count down to around 0.2 (almost zero) but this was an expected result of the carboplatin.

Finally, there is a marker in the blood (can’t recall what it is called) that gives an indication of cell regrowth or turnover. If the tumour were ‘taking off’ on us, that number would be going up – but it has been going down. Again a good sign that the chemo is working as we want it to.

So now we wait, likely three weeks, for his blood counts to plunge and then recover.

Harry's first day in his bumbo chair

Joyful Babble

(From Friday March 14th, 2008)

Last night (Thursday March 13th) was my turn overnight with Harry at his ‘Room of Healing,’ and though our day started early, we had a wonderful day together, with much to be thankful for.

Harry woke up at about 6:00 am. Not a great start to the day – he was sick to his stomach – though not as much as the previous night. But, as I held him in my arms in the rocking chair, cuddling and comforting him, instead of falling off back to sleep, he seemed to really ‘wake up’ for the first time in days. He cuddled with me till about 7:00 then catnapped a bit in his crib till 8:00. By that time, however, he was clearly awake and demanding that Mummy pick him up.

Harry and I had a wonderful day together. He was so awake and alert, more so than he has been in at least a week if not two. He insisted that I hold him pretty much all of the day, which was okay by me. We sat in the rocking chair in his room and cuddled. For the first time almost since we moved into this room, he was really looking around and curious about his surroundings. He only cat-napped for about three 30 minute sessions all day. It is almost as if he is really awake for the first time in days and didn’t want to sleep and miss a minute, now that he was feeling better, to spend time with mummy.

He seems to have decided that he doesn’t like me wearing my glasses, he kept reaching up for them and taking them off me, something he actually hasn’t done before.

My most joyful moment today was when we were cuddling in the morning sunshine and I babbled “ba ba ba ba” to Harry and he, tentatively at first, then much more strongly, babbled back in response “ba ba ba ba” and then “mum mum mum”. We did that several times today and it made my heart sing to hear him again. He has not ‘talked’ to me in a long while and I cried tears of joy to have him respond to me in that way again.

We sat and read stories and, really for the first time, he was very interested in looking at the pages, attentive to the words and even helping me turn the pages, something he wasn’t really that interested in doing back before we came into the hospital on Feb 22. This was another really precious moment, because it seemed to say to me that, through all of this experience these past few weeks, his cognitive development has been continuing and he is ‘waking up’ from his first round of chemo and achieving yet another development milestone.

My mum Norma - Harry and Lydia’s Oma - came to the hospital to spend the day with us as well. Harry hasn’t seen Oma since last summer, so he was a little anxious and seemed to prefer gazing at her today from the security of Mummy’s arms. I reassured him that Oma was my mummy and has wonderful arms to cuddle in too.

When Oma came she and Auntie Cecelia brought Harry’s bumbo chair from home. He was feeling well enough to actually sit for about 30 minutes in the chair and look at books and play with a truck. Yet another joyful and precious moment to savour today.

Please continue to pray that he wards off infection in this vulnerable time and that his nausea is limited and that he sleeps soundly!

Love,
Cynthia

Oma's here from Guelph, a delight to Harry & Lydia, and of course Mum and Dad

Laughing with Oma

Wednesday March 19th, 2008 (The LAST Day of Winter)

When Lydia and I (Cynthia) arrived at Harry’s Room of Healing this evening (to pick up Oma who had spent the day with the wee prince) we were greeted by the sight of Harry cuddling in the rocking chair with his Oma and the truly heart-warming sounds of Harry giggling joyously.

This week Harry has continued to gain strength, all the while as his blood counts continue to drop (as they are supposed to). He has been more alert and engaged every day since I wrote on Friday March 14th. His weight has stabilized since then too – at about 18.2 – 18.3 lbs. So he has lost weight since he arrived in the hospital – but not too much – and seeing as he has been on a liquid diet since then, we think that is quite good.

The downside of the liquid diet is continued nausea – basically he is being tube fed directly into his tummy (the nose tube) 24-7. So his tummy is always full. Tummies are not meant to be always full. At least 2 times, but more like 4 or sometimes 5 times, in a 24-hour period his tummy just seems to say, “ugh, I’ve had enough of always being full” – and he vomits. He pretty quickly settles down again (after we change his shirt, wipe him up and clean up his bed). It is frustrating, but likely something we have to simply deal with until the tumours shrink more and relieve some pressure off of his tummy.

That said, he does show an interest in food when we are eating in the room – he even ate a few small bites of banana this evening. So we might ask if we can reduce his tube feedings a bit to allow him to feel hungry and maybe try to eat some real food. It will be important to get him back on solids sooner rather than later – babies who are tube fed for too long can develop an aversion to having food in their mouth – something we want to avoid.

He had a bit of an eventful day with Oma. His oncologist thought his chest sounded a bit ‘gurgle-y’ in the early afternoon, so they sent him off for a chest x-ray to see if his lungs were clear. Fortunately, that checked out a-okay. He was likely gurgle-y because he had just been sick before the oncologist came in, but we’d rather they err on the side of caution!

Next, there was some concern over whether his central line might be leaking (yes, the new one, and yes, ugh, again). The dressing was changed for the first time since the surgery yesterday and there was some bleeding around the exit site (where the line exits his chest). One of the lumens was blocked on the weekend. Although they did inject a drug that ‘cleans’ the line and that seemed to have worked (the line was working well again yesterday and today). This was the scenario we had faced with the other central line. So they did another line-oscopy to inspect the line – but that also turned out well. The line is not leaking and is working well. The bleeding is likely just a result of a scab being pulled as the dressing was changed. Again, we’re thankful for their caution in these matters.

Harry’s temperature has occasionally risen above 38 C, the threshold at which they assume there's an infection, give antibiotics, and draw blood to grow cultures to see if, indeed there is an infection. Thus far, he has not actually had an infection and we think his occasional temperature is much more likely related to teething. But again, we are reassured by the abundance of caution!

And teething indeed, poor little guy. The injustice. As if going through his first round of chemo weren’t enough, no he has to cut FOUR teeth in a weekend (this past weekend), bringing his total now to 8. He still seems to be cutting molars too – he is on and off all day chomping on his thumbs down the side of his mouth.

So all in all, he’s doing very well. We feel so surrounded by love and are so incredibly grateful for all of that love, prayers, thoughts and meditations being sent our way. We truly believe that this community of love is healing Harry and we are so honoured to walk this path being carried by so much love.

Thank you, truly thank you.
Love,
Cynthia