No Platelets for Todd on Day +14--Cleveland Blood Bank cites shortage

On Day +14, September 30, 2014, Todd's CBC blood counts were:
Hemoglobin: 7.8, White Blood Count: 70, and Platelets: 8,000.   Technically, he needed a platelet transfusion since his platelet count was under 10,000 and a blood transfusion since his Hemoglobin was below 8. 

Unfortunately, the Red Cross Blood Bank located within the Cleveland Clinic denied Todd platelets because of the platelet shortage they are experiencing.  (Did did receive a blood transfusion).  I was upset by this news and asked the doctor on call to come by his room to discuss this me. 

First, let me say that the doctors here are great advocates for their patients and argue our case for whatever they need to the blood bank.

Q.  I asked him why they denied him platelets?
A.  His response:  They denied him based on the concern that they have been giving him platelets daily, but that he wasn't retaining them.  In light of the shortage, they felt they didn't have enough to spare if his body was going to remove them and/or his body wasn't retaining them.

Q.  I asked about using the HLA matched platelets that he had requested?
A.  Apparently, they still were not able to provide them. 

Q.  Next, I asked if I could donate blood for platelets or if his brother, who was the bone marrow donor, could give blood/platelets that way? 
A.  He said that this was  not easy to do because it is very cost prohibitive and that there are too many clerical errors made in labeling and getting the donated blood to the correct patient.

Q.  I asked him how low did his platelets have to drop for it to be critical if he didn't get a transfusion? 
A.  His response: He stated that there was no set number they had to drop to where the Blood bank could no longer deny him platelets.    He explained that Todd's body would eventually be able to make and retain his own platelets once the new bone marrow is more engrafted. The decision is based on their own judgment.

The next day, Day +15, Wednesday, October 1, 2014, a new doctor was on rotation.  Todd's CBC was HBG: 8.5 (so no blood transfusion was needed) and his white count finally hit triple digits: 130, but his platelets were down to 6,000.  There was talk about giving him the HLA platelets, but not until next Monday, October 6.  I'm not sure the reasoning, either they felt he would be in a better place to keep them then or that they wouldn't be able to get them until them.  We were surprised when his nurse came in late in the morning saying he was getting regular platelets that day.  We asked what had changed, but she didn't know.  The doctor on rotation came in and explained that as the advocate for the patient, they argued again and did testing to prove that Todd's body was not creating any anti-bodies that was killing the infused platelets (This can happen because the body thinks that the platelets are a foreign invader and try to kill them).  Since the blood bank had this proof and reassurance, they were more receptive to the request for platelets. 

Yesterday's transfusion must have worked, his platelets went from 6,000 to 9,000 today (Day +16) October 2, 2014.  His white count jumped to 300! But his Hemoglobin was down only slightly at 7.9, which meant he needed both platelets and blood today, but thanks to the great doctors on staff here and the tests they did, he received both with no problems.  We are hoping the white count will start doubling at this point.  This gives him greater immunity to infections. 

We are all hoping to be released from the hospital one day next week, October 6-10th, Days +20-+24.  While this are the number of days since the transplant, we have actually been at the Cleveland Clinic for 25 days already.

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!