HSCT Mexico - Blog

Day +59

Tue, 04 Jul 2017 17:52:00 +0000

Ronnie started his physio yesterday and will be going twice a week for the next 8 weeks.

He's feeling really good, still has his days when he tires easily, he has had a lot of muscle loss on the right side of his body. His right hip,quad and hamstring need a lot of strengthening. You can see the muscle coming back in his calf, which is very encouraging.

We met his Hematologist last Tuesday and the Dr .was impressed with his blood counts. I have been trying very hard to fill him up with lots of red meat,beans, well cooked vegies, smoothies with bananas,oranges,hemp seeds, flax seeds and protein powder. It seems to be helping. They say you are what you eat. The Dr. has also added him to the HSCT transplant registry, so if any problems arise, he now has a number of Dr's to contact.

His rituximab has been set up by joint effort in St Catharines starting on July18th. He will see the Dr.before each infusion as well.

Slow and steady wins the race, fortunately Ronnie has the luxury of taking it easy as we have no little ones to look after and he is retired so no need to rush any where each day.

Our enjoyment is grabbing a coffee and a tea and going to sit by the water other wise known as the Chippawa Creek. There's something so therapeutic about sitting near water. We were sitting in the sun today and I went to get Ronnie an umbrella and two very nice gentlemen invited us to sit with them in the shade. We had a wonderful morning and met two very nice guys.

If the simple things in life don't put a smile on your face then you will never be truly happy!

Day +17 May 23rd.

Wed, 24 May 2017 01:51:00 +0000

Wow, we have been home for 4 days and the improvements have been mind blowing. Ronnie walked to his sister's today with walking sticks, mask and no brace. He has been doing a few exercises as well; riding his stationary bike for 6-7 min, calf raises and planks. Slow and steady wins the race. He is completely bald and he lost 21 lbs while in Mexico. But I am happy to announce he has gained 4-5 back already (and I haven't even made him his pizza yet he was craving).

He has an appointment set up with his neurologist on July 21st and is waiting on an appointment for an MRI in 3 months. Joint effort is setting up his Rituxan infusions. Dr. Foley will see him every two months before the infusions to keep a close eye on his blood counts.

We are both really living in this surreal world. Is this really happening? Did we just spend a whole month in Mexico? We have been told you are on a roller coaster ride for the first year, so is it going to happen and when will it happen? Patience is a virtue, we will face what ever is thrown our way and get through it together. C'est la vie!

He was pretty happy today to call the drug company and tell them they can have all the drugs and equipment back, he wont be needing them any more. He was feeling a little smug! ha ha and it felt great he said.

Ill try and update once a month now unless the roller coaster comes along and he forcefully has to jump on. We will be trying to live La vida loca.

Susie xxoo

In the airport waiting to board.

Joking around with his Mothers wig

Out for a walk without his brace.

Day +10 Discharge Day

Wed, 17 May 2017 03:42:00 +0000

I don't even know where to begin. The day started out like every other day here with the doctor coming to take Ronnie's blood. We hopped in the van and headed for the clinic, hopeful that Ronnie's white blood count didn't drop too low and he would be ready for his Rituximab. We waited anxiously for Dr. Ruiz to come into the room. Great news, Ronnie's white cell count was blown out of the water. It was up to 25,000. Dr. Ruiz said this is a great sign that his bone marrow is producing enough cells for recovery. He said Ronnie is in the top 10% of patients who see results right away from the treatment. He can move his right foot up and down (he hasn't been able to do that for quite a while because of drop foot) and the sensation down the back of his spine called Lhermitte's is gone.

He said HSCT has been successful and he is discharged to go home. Ronnie cried, I cried and Dr. Ruiz teared up as well when Ronnie thanked him for giving him the opportunity at a new life free of MS. We know he has to be careful for the next 6 months. Take his meds, stay away from raw food, stay away from germs (don't be around large crowds of people) wash his hands a hundred times a day and keep his hands away form his face. He will also need a lot of physiotherapy to get his strength back in his legs. The MS attack did a number on them.

He has lost quite a few pounds as well. But I'm pretty sure a few weeks of pizza and pasta will take care of that.

I don't think he would be where he is today after all this treatment without the amazing support of everyone back home.

Dr. Ruiz says 30% of recovery is in your attitude. His positive attitude comes from not wanting to let anyone down that has been rooting for him. Your prayers and messages have and will stay in our hearts for ever.

Our beautiful Melanie, don't know what we would have done without her. She was our liaison between the doctors and Ronnie.

Me pinning Niagara Falls on the map

Ronnie with his parting gift from the Clinic

Laura, Lupida and Paco, the best nurses in Mexico.

Dr. Ruiz, Ronnie and I saying our goodbyes

Thumbs up, HSCT is over and Ronnie kicked MS to the curb!

Day +9

Mon, 15 May 2017 22:22:00 +0000

We had a day off today, we did something different - we relaxed ha ha . Ronnie's stomach is still not right. Dr. Priesca called and says it sounds like it's from all the medication he has been on. He is taking more stomach medication to try to fix the problem.

Tomorrow the nurse or doctor comes for the last vial of blood. Yeah! No more pin cushion. The blood will be tested for his white blood cell counts, and if all is well he will be given his last infusion, which is Rituximab. This is a cancer drug given to destroy any T or B cells.

We have had concerns from people saying Ronnie could be in danger of contacting PML which is a disease in the brain (There are MS drugs that have a higher likelihood of causing this than the dose of Rituximab he will be given). Dr. Ruiz told us you have a better chance of getting struck by lightening while here in Mexico than contacting PML. He's the greatest!

Rituximab is also being used off label for MS patients in the United States.

When we come home, Ronnie will also be getting an infusion of Rituximab every two months for the next year. This is precautionary, as Dr. Ruiz feels its important to mop up any lingering cells that could cause a relapse. Thankfully, Dr. Foley at Juravinski cancer clinic in Hamilton has agreed to follow Ronnie and prescribe the drug. He is actually looking after a young lady from Toronto that was in Mexico in December.

I May not be there yet. But I'm closer than yesterday!

Ronnie and I enjoying a little down time this week on the roof top. You can ask him who got skunked playing cribbage (and It wasn't me).

Day +8

Sun, 14 May 2017 23:24:00 +0000

Today was a special day, the nurse came to draw blood and give Ronnie his shot in the morning. We had an appointment at 1:00 for the results......drum roll.... Everyone in his group is out of Neutropenia! So exciting, no more masks, unless around a crowd of people. His white blood cells went from 500 on Friday to 13,500 today. They will go down to normal in a few days which is between 5,000 and 12,000.

Ronnie is having some GI problems. They think it could be from all the medication and the chemo. He took another praxolan for his stomach and some riopan before bed. Hopefully this helps, if not we will see the doctor tomorrow.

He is pretty pumped with his experience and treatment so far. Life is good!

Ronnie and Dr. Priesca

The group taking off their masks with Dr. Priesca (AKA Dr. Lust) with the nice pipes!

Day +7

Sat, 13 May 2017 18:21:00 +0000

Wow, what a difference a day makes. Ronnie woke up feeling awesome. He could move his right foot up and down, which he hasn't been able to do for quite a while. It was pretty exciting, I have to say.

We went outside for a visit with some of the other patients and carers that had gathered in the little pod. We exchanged war stories. Some are having a tough time now because they were in a later group, experiences that Ronnie has already been through. The fresh air was invigorating for him.

He actually asked for a omelette for breakfast, so when in Rome! I made it with shredded chicken, fried onions and cheese and a touch of salsa. It was quite good.

The little stubble on his head are discreetly falling out. But it doesn't matter because he is handsome with hair or without. Now we will have 3 baldies in our family, Joining both my brothers Stevie and Billy.

Take every chance you get in life, because some things only happen once.

Ronnie with his nurse Laura this morning.

Day +6

Fri, 12 May 2017 20:52:00 +0000

We are counting down the days now, The finish line from Mexico is in site, but the new stem cells finding their way, is just beginning.

Ronnie had his blood testing and fligratsrim shot this morning.

I was thinking because he felt better today his white blood counts went up, but we found out when we went to the clinic that they actually went down to 500 so he's still in neutropenia.

The feeling of tiredness is not necessarily associated with a low white blood count. He will have another shot in the morning, hopefully bringing the white count up and Ronnie out of neutropenia.

He was having trouble the last couple days drinking and eating; he had a knot in his stomach. We called Mel who relayed the message to Dr. Ruiz Jr. The doctor wanted to see him so 15 minutes later Angel was waiting outside with the van to take us to the clinic. We went right into Dr. Ruiz's office, he examined his stomach and it was determined Ronnie was dehydrated and constipated. They go hand in hand. So upstairs we went to the chemo room and Laura infused him with 3 bags of fluid along with something for his stomach. We also received a prescription for the other problem, and I'm happy to report everything came up roses.

Off to bed, tomorrow's another day!

Life is tough my darling. But so are you!

Day +5

Thu, 11 May 2017 18:09:00 +0000

Ronnie is still drained right out, there's no gasoline left in the engine. He had a shot this morning and hopefully it will doing its job of helping with the recovery. Back to see the doc tomorrow.

The one who falls and gets up, is so much stronger than the one who never fell!

This is our apartment building and security guard. Keeping us all safe!

Day +4

Wed, 10 May 2017 22:18:00 +0000

Dr. Martin was here bright and early for the Filgrastrim shot and blood draws. Ronnie is like a human pin cushion, but he is taking it all in stride.

Bye Bye MS, sucks to be you! A new immune system is on its way. Neutrophil counts were 800 this morning, which means the Chemo has done its job and Ronnie is officially Neutropenic. The Doctors were quite happy with his numbers when they checked today. They said they should be heading back up by friday- it's a waiting game now.

Sanitizing is vitally important, washing our hands and wearing masks. Thank God for Lysol wipes.

Accept what is. Let go of what was, and have faith in what will be!

Day +3

Tue, 09 May 2017 18:02:00 +0000

Hello to all our disciples following Ronnie's journey. You truly are a sense of inspiration for us battling the healing process of HSCT. Reading all your supporting messages and feeling the love of your prayers are very therapeutic. Keep the ball rolling!

We are told Ronnie will be on a roller coaster ride of many ups and downs for the next 12 months. Having so many supporters will certainly make the ride a little less bumpy.

Today has been pretty uneventful. Ronnie is tired, not sure if he has reached full Neutropenia yet. More blood tests in the morning, then back to the clinic for results.

Until tomorrow.

Believe you can and you're halfway there. -Theodore Roosevelt