Please, prayers needed for baby with cancer

[kellyc]

thank you so much for the prayers and the pointers bruineric. i will pass that along. here is the most recent update:

August 09, 2007 at 10:30 PM EDT
Today started with our little guy being cranky because he was not allowed to nurse. Those of you who have met Leo know that he really enjoys his food and can prove it by his many impressive folds. You don't get to be over 22 lbs (10kg) this quickly otherwise and so he was not pleased that no meals were forthcoming.

The day only got worse as Leo did unfortunately experience the nasty side effect of tons of gas from one particular drug during his chemo treatment. The poor thing did not sleep at all in spite of all of the drugs he was on, he just kept on crying and moaning. His stomach was so full of gas that it was hard as a rock and just huge. We did keep him upright throughout so he was able to burp continuously which provided him with at least some relief.

It is now late in the evening and Leo is feeling better. He's still uncomfortable but does thankfully not appear to be in pain. It's time to call it a night and get some sleep & hope that tomorrow will be a bit easier on our little guy. At least we should get to go home at the end of the day!

 

[Criada]

Still praying for Leo and his family.

 

[kellyc]

they seem like such nice people! here is the very latest:


August 11, 2007 at 01:02 PM EDT
How could we forget to mention! Leo got his very first tooth, at the bottom, while we were in the hospital on August 5th, at exactly 6 months of age!


5 August 11, 2007 at 12:22 PM EDT
We're home!!!! Finally a good night sleep for all of us without interruptions!

Yesterdays chemo went a bit better then the day before. This time we had one of those large exercise balls to sit on and the smooth bouncing seemed to help with the gas and it calmed Leo down a bit. He was still in pain and didn't sleep through any of it, but with two chemo days behind us we've picked up on things that we can do to try to make it less painful for him.

So we're home now and brough half of the pharmacy content with us it seems! Leo has 6 medications that he needs on a daily basis, some of them 4 times daily. We will also have a nurse come once a day for an injection of g-csf to help his body stimulate white blood cell production. He will need these injections for 7-10 days after each chemo cycle.

We're told that 5-7 days following chemo Leo's body will become neutropenic, which means that he will have no white blood cells mature enough to fight off infection. Should he develop a fever during this time it would be an emergency situation that would require at least a 48 hours hospital stay. We will be packing a hospital bag just in case so we're ready should anything happen.

Now as for the long term, Leo will have at least 5 cycles of regular chemo, possibly 6. Each cycle consists of 2 days of chemo out of every 21 days. After the last cycle of regular chemo he will be given one cycle of "super high-dose" chemo with a blood stem cell transplant. During this time he will be in strict isolation for 14-21 days at the hospital and in hospital, but out of isolation, for possibly the same length of time or longer. Leo will be given antibiotics for a full year following treatment after which his immune system will hopefully have recovered fully.

We did bank Leo's umbilical cord blod at delivery which the doctors prefer to use. They will collect stem cells from him after chemo cycle 2 (and possibly after cycle 3) to ensure we have a back up in case the cord blood has been contaminated during the collection or storage process.

In the mean time Leo will be getting chemo through his ommaya into the CSF (brain fluid) on a weekly basis. This will temporarily be stopped during the "super high-dose" chemo, but will be continued once it's safe to resume for an unspecified amount of time.

Leo will also have EUAs (examination under anesthetic) every 3 weeks, the day before each new chemo cycle, to check his remaining eye for tumours. If any tumours are found they will be treated with lazer and cryo therapy while he is still under the anesthetic and are not expected to pose any problems. The EUAs will continue until he's at least 3 at very frequent intervals. After the age of 3 he should be able to cooperate more and may not need to be under an anesthetic for all of his examinations. It will be important to monitor him frequently until the age of 5 or 7 after which the risk is significantly reduced. Obviously he will continue to have eye exams at regular intervals even after that age.

Leo will of course be monitored closely during the whole process and will be receiving blood work twice weekly at Sick Kids hospital. Thankfully by a finger poke rather then needle. We do have a few other examinations coming up as well within the next 2-3 weeks. Leo will have a full bone scan and then hopefully a CT or MRI before the start of the next chemo cycle.

I think I remembered most of the details. Clearly our calendar is filling up quickly, but hopefully we will be able to stick to a routine here at home for both our kids so that it will be a bit easier for them.

Speaking of both children, Alessia is doing well. She has had a lot of play time with Nonna (Remo's Mom), Mommo (my Mom who has flown in) and the ever so entertaining Fausto (Remo's brother)! She is happy to have us home, is bringing Leo her favorite toys and has resumed kissing him whenever it's nap or bed time

 

[mrswebber]

It's soooo good to hear you sound so positive. I pray that God will keep you strong till your little boy is totally well.
His first tooth eh! "Go Leo"
I never had this pleasure, as I have no children of my own. I bet it's a real exciting time for a parent.
You're doing great. You can be very proud of yourself.

 

[kellyc]

here's another update- this isn't my child, it's a friend of a friend. thanks again for everyone's continued prayer. they aren't out of the woods yet.

August 15, 2007 at 08:10 PM EDT
Poor Leo is really feeling the effects of the chemo drugs at this point. He has been extremely constipated and fussy for days now with minimal sleep. So far we've tried everything from laxatives and meds to enema, but to no avail. We spent 8+ hours at the hospital hooked up to the iv to hydrate him yesterday and today. We can expect to do the same for the next two days as well. Hopefully we get things moving before the weekend.

Leo's counts have dropped significantly so we expect him to be neutropenic soon. He has developed a very nasty diaper rash from the corrosive chemo meds in spite of all of the barrier cream. He is actually bleeding because his skin is so raw which of course poses a high risk of infection. Our poor little guy now needs to be soaked in a bath tub each and every time his diaper is changed to try to keep the site clean.

We also had a bone scan today which we will be getting the results for tomorrow. By all accounts that should be all clear. The next big test will be next Tuesday, Aug. 21st, when Leo will have a full body MRI. There are 2 very significant things they will be looking for. The first one being the current size of his brain tumour and whether shrinkage has occurred. The second issue is whether any tumours are present along his spine. As you can imagine we are anxiously awaiting the results.

 

[Stephanie7]

Father God, I pray and ask, make a way where there seems to be little. Heal little Leo and spare him from the ill effects of chemo. Remove his pain and hold him in Your Arms. Lord, I pray and ask in the midst of this that You will bring back a hopeful report for all to hold unto to. Bless little Leo and comfort tthe parents and strengthen them as they go through this difficult time, In Jesus Name, Amen

 

[ralangley]

Praying for Leo and his family.

 

[JPPT1974]

Lord watch over this baby
Guide and protect him
Please give his family and him
Prayers and thoughts
As well as hope
In thy name and will amen

 

[USNavyBlueAngel]

Prayers have been sent up!!!

God bless, and stay strong in His word....

 

[Proph]

In the name of Jesus. Cancer leave this baby now!!!! AMEN