Preparing for a Stem Cell Transplant

This is a video that should help anyone preparing for a stem cell transplant or any other scary treatment for their blood cancer. In it Adrian is chatting with Ebi (father of Nathaniel Nabena) about his experience of being the parent of a child being prepared for a stem cell transplant and also the psychological impact on the whole family.

Summary of the video

Ebi started by expressing his thanks to this group for supporting the fundraising campaign. By God’s grace the rest of the money was raised in under ten hours following a TV broadcast which was a miracle.

The tests to prepare for a stem cell transplant started with a full blood count and for the first time since November the platelets stayed at 217 with no help from blood transfusion which is a total miracle in itself. The doctors are saying this is good progress.

They won’t be using total body irradiation to wipe away any leukaemia cells as a bone marrow biopsy showed only 0.001% of them left after chemotherapy. When he started treatment over 60% of his bone marrow was cancer cells. So they will use high dose chemotherapy to clear the bone marrow before the stem cell transplant. They will use an umbilical cord stem cell instead of a parent to child because we couldn’t get a complete match.

Two weeks ago they did tissue typing plus lung function tests, a heart scan, chest and head CT scans, audiology as the antibiotics given during transplant can cause deafness, a physiotherapy test, dental check, abdominal scan to check liver, kidneys and spleen and also a consultation with a dietician. To the glory of God he passed all these tests and only opthalmology is left.

Brief clip from My latest conversation with Ebi on how he’s preparing himself and family for his sons stem cell transplant. Full video on Facebook. Real hope mixed with tears. Inspiring for all facing any challenges. #bloodcancer #stemcelltransplant #aml #amlleukemia #leukemia pic.twitter.com/GwmmZUH4Mb
— Adrian Warnock (@adrianwarnock) May 16, 2021

By God’s grace he is in good shape and we have a pre bone marrow transplant meeting on the 19th May with the transplant team for them to let us know what we are going through. We have some booklets, quite scary but at this point in time we don’t have a choice. We are going ahead and by God’s grace we will sail through. We are told he will have to be isolated for a minimum of six weeks then once the stem cell is able to graft with his own and he’s able to adjust he will be released and monitored for the next three months just to check everything is OK.

So the bottom line is, it’s a tough one to gather in your head but with God’s mercy and grace it will be a success.
Please pray along with us that it will be successful and the disease won’t return.

We also had an interview with a psychiatrist, Great Ormond Street are holistic in their treatment and it isn’t just about the drugs. So we have the psychiatrist, physiologist, play team, things they will use to engage him so he will be distracted as much as possible. Also the dietician told us which foods are safe and discussed the possibility of a feeding tube if necessary.

Tentatively admission date for the transplant is 28th May.

To be truthful if I had my way I wouldn’t put him through it but we have to do what we have to do. We are told that if we didn’t go down the transplant route he might relapse. He’s just had a drug treatment of chemo drugs in small quantities just to make sure the leukaemia doesn’t reach his brain and a bone marrow biopsy to check cancer levels as the blood results show he’s in remission so we have this short window to go for the transplant.
The doctors are very straightforward, they tell it how it is and stress that people can and do die, he may not make it. I advise people facing this not to go to Google as it’s full of scary news. There are also cases of people who are still alive 20 or 30 years post transplant.

Prayerfully we do what we have to, there are things I can’t explain to my family at this time but I give them information as needed. It’s good to cry every now and then but you have to cling on to hope. I just intend to focus on the positives, leave the negatives and put all my trust and hope in God.

The video is also available on YouTube:

Although the target has been reached it is important to have a buffer in case of any unexpected costs, and to ensure that Nathaniel’s future needs are met. The family also want to help others in a similar position with any left over. So do continue to donate if you can: