Day +59
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.
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
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
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
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
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
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
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
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
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
Day +2
The last couple weeks have been so intense and volatile and these last few days have been so calm and stable that they are almost monotonous. Crazy really!
Ronnie had his blood drawn this morning from two of the doctors that came here to our apartment. He also received a poke of the nasty filgrastrim shots. Thank goodness it's only once a day now.
This is needed to draw out white cells from the bone marrow to help speed up the recovery process. We boarded the van to depart to the clinic for noon, Ronnie and I met with Dr. Ruiz Junior who is also a Hematologist. He explained that Ronnie's bloods were right where they are suppose to be (going down). Full blown Neutropenia should happen Wednesday or Thursday of this week. This is not a prerequisite of HSCT working, it is a result of the procedure - it might happen and it might not.
In the end we only regret the chances we didn't take!
Ronnie and Lorenzo on our way to the clinic
Ronnie with Dr. Martin and Dr. Monica
Day + 1
When we came home yesterday the doctor told us Ronnie must stay in the apartment, eat, drink, and rest. If I go out to the grocery store or any where around people I need to wear a mask.
The doctors will come every day and give another filgrastrim shot (once a day now not twice), which helps speed up the healing process. They will come every other day for blood tests and Ronnie will go to the clinic every other day for the results.
Lorenzo our driver will drop off Neutropenic food, not sure what it's like but we will soon find out. Because Ronnie is in the Neutropenic stage with his white blood count so low, we have to be very careful of infection. Food must be well cooked and washed, no fresh vegetables (cooked only) and some fresh fruits with thick skins. I have been wiping everything down we touch with Lysol wipes, sanitizing tooth brushes, cell phones, remote etc. Our cleaner Kathy comes in every day now and sanitizes everything as well. She changes the sheets and cleans the whole apartment. She's a sweetheart and we are very thankful for all her hard work.
It will be a day of reflecting and counting our blessings and just relaxing (not such a bad thing).
Ronnie on his first day of quarantine.
Day 0
It's going to get harder before it gets better, you just have to make it through the hard stuff first!
Day 0, this is it, the day we have been waiting for, i'ts finally here. The day Ronnie's stem cells get infused back into his body. Then the magic begins for the next 12 months. Dr. Ruiz says to see the full benefit it could take from 12 to 24 months.
There's a saying people like to say about taking the road less traveled. I believe Ronnie has done that with his HSCT trek. Out of 14 people here this month he did not follow the same path. He went up to the highest Mountain peak, reached the summit and is making his way down. And it feels great! Everyone else just had little bumps in the road, except Kirsty from the UK. She had a bit of a rough road as well with the first round of chemo and ended up in the hospital. But she has turned the corner and is doing remarkably well.
The last 4 days have been the toughest thing we have ever been through together. It should be clear sailing from here on in.
Thank you for all your kind words of encouragement to every one who has reached out to us. We love you all and are so thankful to have you in our lives. GOD BLESS ALLABODY! A quote from Grandma Perotti.
Ronnie caving in and getting his head shaved, just to be prepared in case he loses it.
The carers of our group and our driver Lorenzo
Birthday card and birthday t-shirts from the clinic with Ronnie's group
Day -2 and Day -1
Round three of chemo could begin since everyone retrieved their stemmies.
5 hours of chemo began. It's really amazing how fast the time flies. The comradery with everyone is heartwarming. Everyone is looking after Ronnie; Katherine's husband Don has been such a big help, getting him in and out of his big lazy boy chair and in and out of the van. We will have a connection to these people for life..
We were home to bed by 8:30 so we could be ready for the morning pickup at 8:00.
Day -1
We were picked up early because there was a big parade by the clinic for Cinco De Mayo (Puebla is where this special day originated). Napoleon lll tried to conquer Puebla but he was defeated by the Mexican Army. It's basically like our remembrance day .
It's the start of the last day of chemo! Yeah! 5 more hours again. Dr Ruiz came in and checked up on Ronnie. He wants him to have another round of steroids to help him to feel better. Out of 14 patients with us, Ronnie is the only one that had a reaction to the filgastrim shots. It basically put him into a MS relapse.
Slow and steady wins the race. He's coming around telling his jokes that everyone of you back home have heard quite a few times, but he has a new audience now. Ha ha
We are just waiting for his steroids to finish and if this round doesn't fix him up, Dr. Ruiz said they will do another one tomorrow. Not sure if it will be before or after they all get their stem cells back.
Hasta La Vista!
Day -3
Well MS, I hope you are proud of yourself. Attacking a man who was defenseless. You new his immune system was compromised from the filgrastim shots, but you didn't care. You came at him with a vengeance. You sidelined him in bed for 4 days. Attacking his brain, his speech, his bladder and his mobility. You didn't care. You are vile and disgusting!
You thought you could win. But the National Guard of steroids showed up and they began to put you in your place. Slowly, because that's the way they like to work. Toying with you!
They have called up the Chemo fighters again for tomorrow. We shall see how you fare against them this time. Watch your back MS. They are gunning for you.
We were up bright and early and off to the hospital by 7:30. It was PICC line day. This is a line inserted in your chest for Apheresis (stem cell harvesting). It is expected to be a 12 hour day tomorrow.
Ronnie after getting his PICC line.
This is a quote sent to us from a friend. Thanks Phil.
WHAT IF EVERYTHING YOU ARE GOING THROUGH RIGHT NOW IS PREPARING YOU FOR A DREAM BIGGER THAN YOU CAN IMAGINE.
Day -4
Well, we had to go back to the clinic again this morning for another round of steroids, Dr. Ruiz came to check on Ronnie and he said he was having a full blown MS attack. He has had attacks before but this one was the worst I have ever seen.
His brain and his body were not connecting. This was brought on by the chemo and the shots he gets every day. I won't sugar coat how I was feeling. It was very upsetting to find him a couple times on the floor as a result of thinking he could go to the bathroom when I wasn't in the room. It's not easy trying to help a 170 lb dead weight person whose legs wouldn't co-operate get back up on the bed. A few tears were shed! He was a bit better after the first steroids and we are hopeful tomorrow will even be better. We know this is only temporary but scary all the same.
I asked Dr. Ruiz about Ronnie's MS being active with the attack and could that mean he might see better results because of it. He said active MS does seem to show better results so far, so we are very hopeful this will be the case. Considering what he has been through so far, he certainly deserves to have a great outcome.
His voice is squeakier and lower than it has ever been (if you can believe that), again caused by the attack. The attacks are the things people never see. They only see bubbly, outgoing Ronnie, telling him how great he looks. They don't see the bowel, the bladder, the fatigue, or the frustration that goes along with it.
Tomorrow is an early morning, we have to be up and out by 7:30 to go to the hospital to have his PICC line put in. This is used to harvest the stem cells and then infuse another round of Chemotherapy. We have been told to prepare for a long 12 hour day.
Sometimes the smallest step in the right direction, ends up being the biggest step of your life.
Tip toe if you must, but take the step!
Day -5
Well it was a rough night last night, trying to get Ronnie to the bathroom with legs that don't work is not a easy feat. Dr. Martin was here this morning for the good old filgrastim shot. He reported back to Dr. Priesca about Ronnie's condition. 40 minutes later Dr. Priesca shows up at our apartment in his workout clothes to let us know he will be setting up an IV of steroids for Ronnie.
Xavier showed up 10 minutes later to transport us to the clinic. Ronnie had an IV about an hour long of steroids, that should help him with his energy. If not, back tomorrow for another one.
Dr. Ruiz came in to check up on him as well at the clinic (he's such a caring man). He told us this is not unusual and some people have had to go to the hospital for treatment. So its not as bad as it could be. He also said it could take up to 5 hours to see the results.
You are stronger than you think!
Day -6
Its a beautiful day in Puebla, Ronnie is on shot number 7 - half way there.
Ronnie is experiencing severe fatigue like I've never seen before, it takes up so much energy just trying to drink or go to the bathroom. We had to get a wheel chair and a walker to help him get transported around. His legs don't know how to move. The doctor says its not unusual and tried him on a couple steroid pills. Everyone is affected differently with chemo and the shots, some people waltz right through and others like Ronnie not so lucky.
If the pills don't work we will be off to the clinic for an infusion of steroids.
Stay posted!
Always Remember that your present situation, is not your final destination.
The best is yet to come.
Day -7
Today was pretty uneventful. Ronnie is very tired and his muscles are very weak. Had to call to get him a walker to get up and go to the bathroom. He fell in the shower today (he's ok).
Apparently this is a side effect from the chemo and the Filgrastim shots.
Just waiting for the doctor to come and administer his shot. This is number 6, so he might start feeling some bone pain in the next couple of days which should be taken care of with some extra strength Tylenol.
Dr. Juan and Dr. Love (nicknamed by the ladies) - two of the doctors that come and administer Ronnie's shots every night
Beautiful sunset in Puebla
Day -9 and -8
People with MS have always been described as warriors. Reason being, they fight a battle everyday with symptoms, wondering if today is the day they might have a relapse or get worse.
So I realized on Tuesday when Ronnie had his first chemo infusion, it really was an army of fighters being put into his body. Drip by drip the soldiers were marching to get the enemy. They marched for hours and hours, drip by drip bringing in many new ones to fight the battle.
Tuesday night they waited in the trenches, building forts to lookout for the foe. More soldiers were sent in on Wednesday and drip by drip they marched until they met up with the rest of the troops. Then late Wednesday night they came across the enemy and they started bombing them. Four times to be exact. They retreated until morning and Ronnie was sent to the clinic so they could infuse him with medics. Drip by drip the medics entered his body and found the soldiers that were dehydrated and fatigued until they were well enough to fight another battle.
Thursday around 8:00pm the soldiers came across the enemy again. They were ready and sent out the troops, 3 times they were bombed and again at midnight the soldiers snuck up and bombed again.
The MS soldiers were feeling the casualties. The Chemo armies were winning, taking them out one by one.
Friday morning Ronnie had to go back to the clinic to be infused again with the medics.
This time it looks like the Chemo army has been declared victorious over the MS army.
Fear has two meanings:
Forget Everything And Run
OR
Face Everything And Rise
The choice is yours!