Staying at the Cleveland Clinic

While Todd is on the Bone Marrow Transplant Floor at the Cleveland Clinic's main campus, he is not allowed to leave the floor.  So, I have taken some photos of what the floor is like, to give everyone a better idea of his surroundings.

Todd's room.  
 Views from his window:

View from the family lounge area:

 Yes, the Heliport is on top of the Emergency Building right outside his window. 
 Partial picture of the family lounge:

 The Exercise room:

The view out the window of the Exercise room looking towards University Circle.  The Intercontinental Hotel in the foreground.

 The Kitchen area.

Day +12: Turning a corner.

Since my last post, Todd's numbers had gone even lower. He has received platelets every day since the last post. Today, September 28, 2014, Day +12, Todd has to receive platelets and a blood transfusions because his Hemoglobin dropped below 8.

Two days ago they did some HLA typing on Todd's blood in an effort to find a better platelet match. He was receiving platelets every morning but wasn't retaining them. His count at 3 a.m. would be at 7,000 and would go up to 13,000 after a transfusion, but then they would go back down to 7,000 the next morning. Unfortunately, there is a shortage of his HLA matched platelets and they were not able to locate any for him. So, he's been receiving general platelets. 

Today, however, he turned a corner, retaining some of his platelets. He went from 7,000 yesterday to 10,000 today with yesterday's transfusion. He still received platelets because he was right at the threshold of having to get them, but at least he is showing progress. 

He also had to get a blood transfusion because his Hemoglobin was at 7.9 just slightly below the 8.0 threshold number. His white count has been bouncing around but was up from 40 yesterday to 80 today.  The nurse said this morning that she feels that Todd is turning a corner in his progress and that things look good to see his numbers start to climb steadily each day now.

We are so blessed because Todd has not been suffering from many of the horrible side effects some of the other patients have, such as infections in their Hickman catheters (which means they have to be removed surgically and/or replaced) or mucositis and esophogitis (which makes it difficult to eat or swallow and is very painful).  He started losing some body hair today, but that is to be expected.  He is also very tired and still spends a large part of the day sleeping. He has lost some weight (about 10 plus pounds) mainly because he doesn't feel like eating in general or doesn't want to eat hospital food or pre-packaged food that is safe for him to eat; that just doesn't appeal to him.   

We've had a great visit with our three daughters who came up for a visit this weekend.  They brought some funny movies to watch and it was good to hear him laugh!  It was refreshing to our spirits to be around them and just to hug them! 

Day + 7: Blood counts hitting their low

Todd has been doing as expected with no major complications. His symptoms of nausea, diarrhea, and fatigue are expected during this time period. He has avoided the dreaded mouth sores from the chemotherapy until today. He has to perform a strict mouth care regime four times a day. 

His CBC blood counts have been slowly declining. Today, his platelets were too low and he had to receive a transfusion of platelets. This too is normal in this situation. It will not be the last transfusion he receives. Instead, he will be getting transfusions for the weeks and months to come. 

It is hard to read, but today his Hemoglobin was at 10.6. Normal for men is 14-18 gm/100. His white count is at 80 instead of a normal of 4,000-11,000 lcm. His ANCs were 0!  The normal is between 40-60. And his platelets were 8,000 instead of 150,000-400,000 per cm mm. 

Transfusions are given if: 

Platelets<10,000

Hemoglobin 8.0 or below 

Today and yesterday he spent most of his time in bed. The doctors really push exercise though, even when the patients don't feel like it. Two days ago he walked on the treadmill and exercised on the sitting eliptical machine. He also has some stretchy tension bands to work his arms and upper body with. The doctor doesn't expect a regular "workout" but they do want them to walk up and down the halls at minimum when at all possible. This helps to keep them strong and in his words move the healing process along.

I've learned from Todd that if I walk with him, to always push his IV pole for him. This way he has more freedom and it gives him the illusion that he is not attached to it. So, if you are with someone with an IV pole, offer to push it for them, unless they need it to steady themselves. 

Thanks for all the texts, cards, and phone calls. If I had to ask for anything right now it would be to please be good and kind to my family at home, especially my girls. It shocks and angers me to hear that people are not being understanding and kind to them. Even though I've tried to communicate with Administrators, coaches, teachers, and those close to them, it still doesn't sink in!  I understand that it is hard to fully comprehend how we are feeling without walking in our shoes or being in the tramatic place we all are in, but it bothers me that people can't put their own selfish and power-hungry comments and attitude aside. 

So if you want to do anything for us right now, please, please be extra kind to my girls!  They are having a difficult time with this process too. Their dad is sick in hospital, hours away, and they can't see him often. (They haven't been able to visit him yet). Their mom is also far away and can't be there for them like normal. Their grandmother Donna mom has been a tremendous help and she is doing the best she can. She could use some encouragement instead of hassles. 

I am grateful for this support!  

Day 0: Bone marrow transplant

Todd's brother and bone marrow donor, Tom checked into surgery around 6:30 this morning, September 16, 2014. He went into surgery around 7:50am under general anesthesia where they harvested his bone marrow. The harvesting went perfect, even though they had to increase Tom's intravenous fluids due to 2 drops in his blood pressure from the anesthesia.

They began Todd's pre-meds about 12:00. They gave him Benadryl (to prevent any reactions), Tylenol, and Solu-Cortef (a steroid).   

Tom came up to Todd's room after being in recovery at about 12:50 pm right before the marrow came up. We snapped a photo of then together with the bag if marrow. The transplant itself was started at 1:10 pm.

They collected 405 ml of bone marrow. A normal-sized collection. 

We are so blessed to have Tom to donate for Todd. We can't thank him and our Heavenly Father enough 

Tom was tired still from the anesthesia, but he was able to go home with his wife right after their visit. 

The infusion of the bone marrow will take about an hour and a half. Todd is sleeping now about an hour into the transplant. 

Check out these videos

PS. Todd's transplant infusion finished at 2:39. pm. 

Day -1 before Bone Marrow Transplant

Todd did not have a good night. He had difficulty sleeping and began to feel chilled. He began to run a low grade fever, which prompted some diagnostic tests to check for infection: blood cultures, chest X-ray, urine samples. 

It will take up to 48 hours to hear anything back on the cultures. His counts overall were still good, with mostly his ANCs dropping a bit. 

He is nauseated and doesn't feel good. He will likely spend most of the day I. The bed. The staff here is very good at addressing pain and nausea right away and giving him medicine to help with those symptoms. We hope to see some improvement so he can eat something, but the next few days are going to be challenging. 

Todd finishes all his chemotherapy. Day-2

Todd received his last two doses of Cytoxin on Satrurdat and Sunday, September 13 and 14, 2014. He suffered from some nausea and headaches but overall did felt fairly well. 

Here he is showing off the multiple bags of IVs: The Cytoxin, Mesna (a protective drug), and some sodium water, and sugar water that is used with the Mesna. 

They gave him plenty of IV fluids to flush out the chemo and protect some of his organs. He ended up with so many fluids that he was retaining water, which in turn caused him to gain 6 lbs in one day. So, to get this water out, they gave him Lasix, which made him have to urinate frequently. 

We were discussing the thought that this will hopefully be the last chemotherapy he will ever have!  

Day -4: Todd finishes 16 rounds of Busulfan

Since admitted, Todd has been receiving Busulfan every 6 hours until 3:00 pm today until He completed the total 16 rounds.  

Until today, he has felt pretty well except for a headache. Tonight he has not had much of an appetite and is experiencing some nausea. 

For lunch he was allowed to eat a take-out pizza and some fruit from an edible arrangement sent from a family member which he enjoyed. His white counts have been high allowing him an exception to the rule of no food outside the hospital approved or pre-packaged food that can compromise his immune system. 

Note:  From here on out please don't send any fresh food or flowers to his room. Balloons, cards, silk arrangements or books are great alternatives. 

He will start his Cytoxin tomorrow at noon for two days. They will give him an EKG to check his heart before the Cytoxin.  Mesna will also be given to help protect the bladder, which will cause him to go to the bathroom every two hours at minimum. 

 He is feeling a little anxious, which is natural, because they are telling him that he is going to feel worse the next week.  No one wants to feel bad.  Of course anyone would feel anxious if you were told you were going to be very sick soon you would be expecting it!  

We are so blessed that we are here with a perfect match donor, never having Acute Myleod Luekemia, and having to back track. 

Day -7: chemotherapy going well

Today, Tuesday, September 10, Todd underwent his second day of the chemo drug Busulfan. I am so happy to say that after 4 rounds (of 16) he has NOT been suffering from nausea, diarrhea, vomiting, or loss of appetite. As a matter of fact he has had a great appetite!  

He walked a lot today, read, talked with other patients, and called family. He is doing so much better than we thought he would. Although he has 12 more rounds of this drug and the other two chemo drugs, we are giving praise now. 

They also gave Todd a breathing treatment of albuterol to open his lungs and a medication called Pentamidine. This medication, we learned, helps to prevent pneumonia and lasts for about 1 month. They had to use this in advance because we think he has a bactrum allergy, and they won't be able to use it after the transplant. 

We have met many patients and/or their family members who are here after already struggling with the diagnosis of Acute Myleod Leukemia. Many had bouts of remission after chemo, but suffered relapses and ultimately had to get a bone marrow transplant. I am glad that Todd's MDS did not progress to AML.  This transplant should eliminate that fear!  

End of Day-8 first day admitted

Todd has had good day of transitioning into his hospital life. He won't leave the bone marrow transplant floor until discharged in 4-6 weeks. 

The nurses are dealing with a slight allergic reaction from the medical dressing/tape they used (after surgery) on On his chest around the Hickman catheter, but Todd is not bothered by it. (See photo). 

They gave him Zofran, an anti-nausea about 8 pm and they began the first round of bone-marrow killing chemotherapy called Busulfan. This first dose will take 2 hour and he will receive it round the clock every 6 hours. 

To help with the side effects, they gave him a cocktail of pills: Dilatin, the anti-seizure medication; Protonix, for heartburn and upset stomach; Cipro, an anti-bacterial drug; Acyclovir, an anti-viral he will continue even after going home; and Actigal, which helps to protect his liver from the chemo. 

His blood counts were great going into the day: Hemoglobin 12.7; White Blood Count (WBC); ANC: 1.72; and a remarkable platelet count: 149,000. 

Next round at 3:00 am, Tuesday, Sept 9, 2014. 

He doesn't like his mouth wash regimen which consists of a rinse of baking soda and salt and then swishing and swollowing 5 cc of Nystatin. Which he says is thick and tastes nasty. He has to do this 4x per day. 

Overall, Day -8 very tolerable. 

Off goes the hair!

Todd decided to have his head shaved before going into the hospital September 7, 2014.  His good friend is a hair stylist, and helped with the honors.  Over the months of out-patient chemo his hair had thinned some.  Last month he had a shorter crew cut to help him get used to it.  Today, he went all the way and had it all buzzed off.  He approached it with a sense of humor anyway. 

I personally think he looks handsome!  And he has a nice shaped head

 Before...

 During...

 After!

 A kiss and a rub for good luck!